NeuroTribes Book Review

Autism, Books, Neurodiversity

I usually write book reviews in batches in my What Are You Reading? series, but I am dedicating a single blog post to NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman.

In the lead up to the book release, Silberman’s book was getting a lot of buzz in the press. It was featured or reviewed in The Atlantic, on NPR, the New York Times, The Guardian, Wired of course, he was interviewed for Forbes, did this great interview for Vox, I could go on but you get the picture. I read many of the articles and was so excited to read the book that I pre-ordered it, even though I am usually the kind of person who just waits for the public library to get it. The promise that he seemed to be making, that he had set out to dispel the common mythology of autism and present a more true and accurate picture of what autism is and who autistic people are, had me on pins and needles.

The background to the writing of this book is that Silberman himself is not autistic, but has been a writer for Wired magazine for years. In the 1990s he wrote a piece called The Geek Syndrome, which proved to be quite popular, about the apparent “epidemic” of autism in places like Silicon Valley. Warning if you want to go back and read that, it’s full of ableist language that made me cringe so hard I couldn’t get through it – it’s clear that Silberman’s come a long way in his view of autism since then. When he was researching that piece, he became curious about why there were so many autistic people in the tech community, and his research into that larger question eventually became Neurotribes.

The strength of this book is in clarifying the true history of autism research and “treatment” protocols (I put treatment in scare quotes because autism is not a disease therefore cannot actually be treated; nevertheless, plenty of people have tried). By far the strongest chapters were the ones on Asperger, Kanner, and Lovaas.

But let me explain, for those not familiar with those names. The popular mythology among non-autistics in the autism community (parents, professionals, doctors) is that in the 1930s there were two Viennese doctors, one in America (Kanner) and one in Austria (Asperger) who “discovered autism” at the same time. It’s been believed that Kanner found a group of children who were profoundly disabled, non verbal or nearly so, and so these children and others like them from then on were said to have “Kanner’s syndrome” which soon was called “classic autism.” Meanwhile, Asperger found a group of highly verbal, professorial and quirky children who didn’t relate well to peers but were quite clever. This type was supposedly lost for a few decades and eventually surfaced as “Asperger’s Syndrome,” sometimes called “high functioning autism.”

One of the reasons this narrative has been so compelling is that it has allowed many people to argue that children with “classic autism” should be cured or treated to help them become more “normal,” while children with “Asperger’s syndrome” are mostly just quirky and smart. Many people who push back against the neurodiversity movement have asserted that in fact we should probably just split these up into two completely diagnoses and not call them both autism.

Such arguments are the reason why Silberman’s new historical record of the history of autism research is so important to how we view autism today.

In NeuroTribes, Silberman reveals that Asperger in fact describes a whole range of abilities and disabilities in the children and teenagers that he saw in his clinic. He correctly perceived that these abilities and disabilities were intertwined, essential to the person, and lasted throughout their lives to varying degrees. He believed autism was “not rare,” once you knew what to look for. He also identified autistic traits in the parents of his patients, though curiously he believed he never met any autistic girls and surmised that perhaps female autism was something that set in during adolescence, since he believed he had met some autistic mothers.

(It is posited that this could be because his clinic/school was a place that children were sent after having behavioral problems in typical schools, a problem that autistic girls have somewhat less often than boys; I’d guess it’s because autism in girls is poorly understood in general.)

One of the most fascinating details of this history is that in 1938 when Asperger gave his first and last public talk at University on his research into autistic children, the environment in Vienna at the time was one in which there was tremendous pressure to fall into step with the Nazi regime. For psychologists like Asperger and his staff, that meant participating in the genocide of disabled children, a program that this book went into in heartbreaking detail. By the end of this chapter I was weeping as I read.

Because of that dangerous atmosphere in 1930s Austria, Silberman asserts that Asperger put a spin on his research in order to emphasize the gifts and societal contributions that certain of his patients had to offer, outlining the case studies of four highly intelligent and scientifically gifted boys who had some minor social difficulties. Because Asperger had elsewhere written of the vast “continuum” of autistic traits, it is reasonable to assume that he was quite deliberate in “pitching” the strengths of a few in his clinic to save all of the children in his care.

After that talk, Asperger’s research was subsumed by World War 2 and tainted by a perceived association with Nazi eugenics, buried for decades. When it finally resurfaced in the early 1990s, his portrait of autism had become skewed to resemble what we now call “Asperger’s syndrome.”

What was happening in the US at the time was that Kanner, another Viennese psychologist who had come to America earlier, was also doing research on autistic children. Kanner had trained to be a general practice doctor and found a convenient back door entry into psychology (basically a clinic said “we need a psychologist, you’re hired”) that gave him a case of Imposter Syndrome. Silberman argues that Kanner was thus driven to establish himself as a person of importance in the field, and that is why he established criteria for autism that was narrow and specific enough to ensure that it would be considered a condition both rare and severe.

The crucial missing link that Silberman discovered was that Kanner hired as part of his clinical staff two former staffers from Asperger’s clinic – most notably, Georg Frankl, Asperger’s chief diagnostician. Despite this connection, Kanner never mentioned Asperger’s work in his papers, claiming the credit for discovering autism himself, and Frankl and Weiss apparently never spoke up either (Silberman implies that they may have kept silent because they owed Kanner their lives after he helped them escape Austria and obtain work visas in the US).

Kanner went on to establish autism as a specific diagnosis for children he believed should be institutionalized throughout their lives, in part because he blamed their parents, particularly “refrigerator mothers,” for what he saw as a severe mental illness in young children. Oddly enough, though he characterized this disease as “infantile autism,” he did not theorize, research, or even seem to wonder what happened as the children grew up – I suppose because they were institutionalized and forgotten by society. In my view, this left a conceptual vacuum in which later generations of parents could insert all manner of theories about toxins, causes, and quackery about cures and treatments that would “recover” their children from this “disease.”

Other key chapters of the book detail the history of how parent groups came to dominate the field of autism research and public awareness, much to the detriment of autistic children in most cases. Bernie Rimland was a big figure in that particular history as an early proponent of toxicity theories, biomed treatments, and what is known in the autistic community as “curebie” talk. Though his son grew up to be a happy, healthy autistic man with a full life, Bernie Rimland to his dying day expressed that he wished above all for his son to just “be normal.”

The chapter on the history of ABA (Applied Behavior Analysis, still the most popular therapy for autistic children) was also heart wrenching as Silberman laid out the work of its founder, Ivar Lovaas. Lovaas believed that autistic children literally were not people – that they were essentially human bodies without humanity. His work focused on shaping their behaviors in order to make them appear more like typical children, which he argued was the only way they could learn anything at all, often using harsh punishments such as electric shocks. His work is associated with the equally horrifying work of George Rekers, who used Lovaas’s techniques to try to cure young boys of “sissy boy syndrome.”

And of course, there are the crucial points in time when the DSM (Diagnostic and Statistical Manual of Mental Disorders) expand their definitions of autism in the 80s, and then add Asperger syndrome and PDD-NOS in the 90s (only to remove them in 2014), which, coupled with better educational standards and services, gives rise to the supposed, mythological, totally nonexistent “autism epidemic” of modern times.

These are the dark annals of autism history that autistic people usually know, while many parents and professionals do not or choose not to think about. So I was appreciative of Silberman bringing them to the light of day, and to a wide audience.

The rest of the book was rather weak.

That may be overly harsh, but when it came to actually showing his readership who autistic people are, how we experience the world, and what we need from society, the work just wasn’t there, which felt joltingly anticlimactic after the incredible detail of his research on Asperger, Kanner, and Lovaas.

I was baffled by the fact that there were entire chapters on ham radio operators and the making of Rain Man (NOT even based on an autistic person, gah!!), and almost nothing on autistic girls or women. Just as Silberman went through the history books to find famous male autistics like Henry Cavendish and Paul Dirac, couldn’t he have dug through and found even one autistic woman? I know that there were female ham radio operators and science fiction geeks in the 1960s, but none are mentioned. The only female autistic to get any play is of course Temple Grandin, whom frankly most autistic women are pretty tired of, because she is always the token Lady Autistic when in fact most of us don’t relate to her that much at all. I could name a number of more interesting and relatable and important autistic people who are NOT men off the top of my head, from Donna Williams (mentioned, but only briefly), to Cynthia Kim, to Lydia Brown (mentioned but that’s it), to Amy Sequenzia (how is she not in this book?), Ibby Grace, and more.

Also frustrating for me was that Silberman focused so much on tech, science, and math geeks in his autistic profiles. Newsflash, not all autistic people are into STEM. I do find those people interesting, sure, but autistic people are also writers, artists, social activists, teachers, therapists, parents, and many other things. I know Silberman is a tech writer and that’s his thing, but it’s misleading to focus on that one wedge of autistic interests to the exclusion of all others.

Furthermore, I was greatly disappointed in how he emphasized the autistic people who are geniuses, inventors, and people who change the world. Even when he profiled people who were pronounced “low functioning” as children, he chose to highlight the individuals who went on to demonstrate genius IQs or special abilities. The fact is, many other autistic people live ordinary lives, and many need a lot of lifelong support.

I was so disillusioned to realize that Silberman was never going to get around to pointing out that it is NOT the material achievements a person is capable of that make them worthwhile as people. This trope that autistic children are worthy of love because they have the potential to be brilliant engineers is so harmful. It leaves the door open for non-autistic adults to try to “recover” them and make them “more normal” while they are young, and it leaves disabled teens and adults who AREN’T brilliant scientists (and let’s face it, most people don’t turn out to be brilliant scientists) out in the cold without a place in society.

That is not autistic acceptance. In this way NeuroTribes fell far, far short of what I was hoping for.

I was left with the strange suspicion that Silberman was in fact reenacting a version of Asperger’s 1938 University of Vienna talk in which he emphasized the gifted autistics to an audience of genocidal eugenicists. Did he consciously, or maybe unconsciously, pitch us a package of autistic geniuses because his main audience is so antagonistic toward autism that he felt this was the only way to reach them? This might be the case, but in the end, for me, it’s not good enough.

Even so, and this may sound inconsistent, I would still highly recommend the book to everyone, absolutely everyone. The history here needs to be common knowledge. And when you are done with NeuroTribes, I suggest you visit Autonomous Press, where autistic people are publishing the work of autistic authors, to round out your reading.

What Are You Reading?

Books

This batch of reviews is a weird mix of YA fiction and spiritual nonfiction. Guess that’s where I’m at right now! Adding a note at the top to tell you that if you really want to delve into a delicious smorgasbord of book reviews, my friend Kristine is doing her annual 12 Days of Christmas review at The Suburban Prairie, and this year she’s individually reviewing ALL of the books she read in 2014! Loving it!

* Unspoken (The Lynburn Legacy Book 1) by Sarah Rees Brennan. This was the last pick for the Curtain and Pen online book club – a supernatural-themed YA novel, first in a trilogy. Set in a small town in England called Sorry-in-the-Vale, the story follows a high school girl named Kami as she sets about unraveling the mysteries of her home town, the strange Lynburn family who seem to hold some inexplicable power over the residents, and her own paranormal connection to a boy named Jared. The characters in this were maybe a little cartoonish, but felt original and appealing. Brennan did a great job of maintaining suspense about various plot lines while still creating twists that seemed logical. I found the relationship between Kami and Jared to be the most interesting storyline and the cliffhanger absolutely shocked me. I have the next book lined up in my reading queue. Also, Brennan was interacting with us on Twitter during our book club discussion – she is an active and friendly tweeter!

* Hand Wash Cold: Care Instructions for an Ordinary Life by Karen Maezen Miller. I love Karen Maezen Miller for the way she shows readers that ordinary life not only can be, but is, a spiritual practice. Her book about motherhood, Momma Zen: Walking the Crooked Path of Motherhood, is one of my favorite books ever and one of the few books I have read more than once. In this one she writes more about her personal life, her path toward Buddhism, the messy years when she was lost and lonely and what she learned along the way. Miller has a lovely, relatable way of explaining that we are all messy and lost and lonely and that’s all right. We are right where we are supposed to be. This is not a set of steps to follow to attain enlightenment – if only it were so simple, as the title playfully teases. There were many times during the book when I thought, okay, I think I’ve got it, do I need to keep reading? but then I would and be surprised once again by another simple and beautiful truth. Highly recommend.

* Raging Star (Dust Lands) by Moira Young. I can’t seem to stop reading YA trilogies, even though they always seem to disappoint in the end. I still really like the central character of Saba, because she is believably flawed, selfish, romantic, a risk taker, a little confused. The trouble is, this last book also felt confused to me. A lot of threads were left dangling in the emotional storyline, though the plot was tied up pretty neatly. Some of the characters did things that just didn’t make a lot of sense to me – DeMalo and Jack both seemed rather baffling in this installment – and others who intrigued me never really went anywhere – like Auriel Tai and Emmi. I am not sure whether to recommend this series or not; I still think the first book was great, and so after you read that you might as well read the rest, but prepare to end on a huh?

* Living with a Wild God: A Nonbeliever’s Search for the Truth about Everything by Barbara Ehrenreich. This book KNOCKED MY SOCKS OFF. I actually feel like writing the entire review in caps lock. I have loved Ehrenreich for years – ever since her 2002 book Nickel and Dimed: On (Not) Getting By in America, in which she investigated and wrote about the lives of the working poor by living and working alongside them – and I’ve read everything she’s written. So when I heard that her new book was a personal memoir about her adolescence, atheism, and grappling with the meaning of life, I was practically salivating to get my hands on it. I almost could not make it through this book because after every page I wanted to throw it down and scream with excitement; you see, I could relate so closely to her teenage ponderings it was rocking my world to realize that there was someone out there who was as strange as me at age 15. When I was finally done I went back to my old journals, some of which I’ve kept in digital form, and found several things that were similar to what Ehrenreich had described (though certainly she was a far better and more intelligent writer). I will say, though, that even though I ADORE this book, it’s a weird one and I can see why many people will just find it too odd to love.

What Are You Reading? YA Edition

Books

Why We Broke Up by Daniel Handler. Best known for his Lemony Snicket children’s books, Handler here is writing as a female first person narrator for a YA audience. The device, or perhaps gimmick, of the tale is that Min is sorting through a box of mementos from her relationship with ex-boyfriend Ed, while composing a letter to him about, of course, why they broke up. Each item begins a new chapter that triggers a memory, and each of these chapter begins with a painting of said item. I actually found these illustrations to be the weakest part of the book and I frequently wished they weren’t there – which maybe is a case of me being too “trained” in illustration, because I was taught that an illustration should always add something to the text and not simply depict what’s written in a literal way. I kept looking for them to add some other clue or layer of meaning to the story, but they were just pictures of objects and by the end I felt they kind of cheapened the writing. My other complaint was that I sometimes found the dialogue a bit too witty to be believed. But what won me over is that this story painted a wonderfully, awkwardly, painfully accurate picture of what being a teenager is like in matters of love. All the misunderstandings, casual hurts, and intoxicating hopefulness of teen love were there, and that’s why I liked this book.

Blood Red Road by Moira Young. An adventure story set in a post-apocalyptic future, this is the first book in a trilogy about a gritty teenage heroine named Saba. The setting is a kind of sci-fi tinged wild west, and the book is written in a twangy dialect that took me some time to get used to – in fact, for a while I wasn’t sure I was going to. But as the action picked up, the dialect writing faded to where I could just hear it as Saba’s voice. With a futuristic dystopian backdrop and a bow and arrow slinging heroine, it’s obvious why this might be compared with Hunger Games, but I found its world to be more intriguingly complex, its storyline more epic, its love story sexier and more appealing. Though it started off slow for me, as soon as I finished reading the last sentence of Blood Red Road I jumped on my public library app and reserved the sequel.

Sekret by Lindsay Smith. This book came highly recommended by my friend Christina of Allodoxophobia and the premise drew me right in: Sekret takes place in Soviet Russia in the 1960s and involves a group of teenage psychics being trained by the KGB as spies. I have to point out that this novel is a perfect example of why the YA genre really should be taken seriously by adult readers – far from being a churned out slew of Twilight copycats, it’s full of inventive and original storytelling. I did have a hard time with the long descriptive passages in the book, but I’m not sure if I was just not in the right frame of mind to focus on them, or if the setting of Soviet Russia was just too foreign to envision. But overall I thought the concept, story, and characters were compelling and unique, and this was a thriller that kept me guessing at every turn.

Rebel Heart by Moira Young. In the second book of Young’s Dust Lands trilogy, the dialect writing was instantly invisible to me, which was nice. It hard to review book two without spoiling book one – well, without spoilers in general, I guess – but it seems to me that the middle work of a trilogy either is a total knockout that takes advantage of its relative freedom (it doesn’t have to set things up nor wrap them up) to be bold and creative (see Star Wars) or it’s a kind of plodding bridge trying to get from point A to point B (see Catching Fire). This, unfortunately, seemed like the latter. There were some good new characters and a KERRR-AAAAZY plot twist (!!!! that better go somewhere good!) but over all it fell a little flat for me.

What Are You Reading?

Books

I’ve read so many great books since I last wrote a book review post that I’m going to have to break them into two posts – so stay tuned for an upcoming YA Edition. Lately I’ve just been swimming in lists of books I want to read and also stacks of library books all over the house, both non fiction and fiction.

How Children Learn by John Holt. I wish I had read this book long ago – in fact I think it would be much more useful for all expectant parents to read this than to read pregnancy guides and infant care manuals! Although John Holt is known as a pioneer of the unschooling movement, you don’t have to be interested in unschooling or homeschooling at all to enjoy and reap the benefits of this particular work (some of his others are more pointedly anti-school). It is based on his extensive observations of young children (as a 5th grade teacher and as a friend) and engagingly outlines his view that young children learn as naturally as they breathe and as joyfully as they play. The chapters on talking and reading were particularly delightful; the only area where I would quarrel with him is on his view of fantasy play. He asserts that children’s natural fantasies are about being adults, and they only play at princesses and superheroes because they are targeted by adult television and movie creators. This to me seemed more like a side effect of cultural beliefs about the evils of TV and not a genuine observation – after all, storytelling is as old as human language. Before there was TV there were books, and before that raconteurs. I wonder if he would change his view if he were alive today (he died in 1985).

Landline by Rainbow Rowell. In this novel about a successful comedy writer and her troubled marriage, there is a contrived narrative device that fuels the story, but Rowell’s writing is charming and honest enough to pull it off. She paints a picture of a relationship that feels real and relatable. One of most interesting things about the book for me was how I was not entirely sure who to root for, so to speak, as the story unfolded. This is Rowell’s strength – the way she balances writing characters who are truly flawed and sometimes annoy you, infuriate you, or do bad things, and yet she gets you to care about them enough to forgive and maybe even love them. Though her stories are simple and straightforward, her characters stay with you forever because they feel like real people whom you actually once knew. The only Rowell novel left for me to read is Attachments, and I look forward to it.

Me Before You by Jojo Moyes. The story of Louisa Clark, a cafe waitress turned caregiver for a quadriplegic man, and Will Traynor, the man in her care who once was a hotshot corporate exec and thrill seeker and now lives confined to a motorized wheelchair. I would have been wary of this novel based merely on the description – wouldn’t it be sentimental and icky? – but I picked it up because all of my Goodreads friends gave it rave reviews. Indeed this turned out to be a book that I could hardly put down once I picked it up. I had the distinct feeling that Moyes probably researched this book by immersing herself in quad support groups online (I suspected the scenes of Lou’s own online research included a head nod or two to actual people Moyes had chatted with). She treats the subject of Will’s disability with raw honesty, and I felt the ending was deeply satisfying.

The Maid’s Version by Daniel Woodrell. It’s rare for me to not finish a book, but I only made it halfway through this one. Woodrell is perhaps best known for his novel Winter’s Bone, which was made into a movie starring Jennifer Lawrence – however, I doubt I’ll get to reading that any time soon. I found his writing style to be so off putting that, even though I enjoyed the characters and was intrigued by the plot (who burned down the dance hall and killed and maimed dozens of people?), I could not plow all the way through the story. There is a bit of an emperor-has-no-clothes feeling for me when I see how highly rated this book is on Goodreads, like am I just not smart enough to like it? I balked against his frequent use of passive voice, long winding sentences, and use of commas seemingly more to break up run on sentences into chunks than to give them actual grammatical structure. But I suppose it’s just a style preference. There is a rhythm to his writing, almost poetic, that to me obscures the narrative completely but to other may be enjoyable.