‘Cognitive Dissonance’ at NeuroQueer

Autism, Books, Neurodiversity, Writing

NeuroQueer is a very cool online journal whose editors are some of my personal heroes and favorite bloggers, so I’m honored and excited that they have published my review of In A Different Key: The Story of Autism by John Donvan and Caren Zucker. Many thanks to the wonderful Ibby Grace for making it happen!

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The press release for In A Different Key : The Story of Autism by John Donvan and Caren Zucker says that this book was “written by two journalists personally committed to widening respect, understanding, and support for the loved ones in their families – and in every family touched by autism.” I want you to keep that sentence in mind as you read my review. I want you to note that the supposed object of this widened respect is the autistic person, and remember that as you read on.

In the preface the authors lay out the premise that this book will be about parents, and that “their two main goals – to find out why their children have autism and to make it go away – remain unfulfilled.” 

Dangerous Assumptions

Autism, Books, Neurodiversity, Parenting

Trigger Warning: This post will discuss ableism, abuse and filicide of disabled children and adults, dehumanizing language about autistic people, and harmful behavioral therapy. I’m placing a trigger warning here as a matter of courtesy to readers who have forms of PTSD that could be triggered by these topics.

I recently read a book called Ghost Boy by Martin Pistorious. This remarkably compassionate and sensitive memoir relays the story of how Pistorious fell ill with a virus at age 12, went into a kind of waking coma for a few years, and reemerged into consciousness in his mid-teens. When he awoke from that blackout state he had very little control over his body, so that he was unable to signal to anyone in any way that he was again aware, listening, and wanting to communicate.

Eventually an attentive caretaker noticed that he seemed to want to communicate and she advocated for him to be evaluated as a potential AAC (Augmentative and Alternative Communication) user. He was able to use eye gaze to prove that he could communicate, and eventually, with hard work and great passion, learned to use a few different AAC tools, including of course typing out his memoir of these experiences.

Meanwhile, I’ve also been reading Typed Words Loud Voices, a book of essays edited by Amy Sequenzia and Elizabeth J. Grace. It’s a slim volume out of Autonomous Press but I’ve been savoring it slowly. These essays (and a few poems) are all written by people who type to communicate; some are autistic, some are not, some are functionally non-speaking, some are partially non-speaking, and some speak most of the time but communicate better through typing than through talking. A common thread through these works is the experience of typed communication as freedom for the authors – freedom from the pain of being misunderstood.

A book review came out in The New Yorker last week that has set my mind on fire. In “Seeing the Spectrum,” Steven Shapin reviews the new book In A Different KeyThe Story of Autism, but he has a few choice editorial comments to make about autistic people himself. I’ll leave my thoughts on the book for another time as my copy is currently in the mail and I plan to read and review it fully.

One of Shapin’s remarks goes thusly: “It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.”

His choice of words here strikes me as notably harsh and hateful, but the truth is, the sentiment beneath them is far from original. The idea that having a child who does not speak or like certain kinds of touch is soulless and tragic is, unfortunately, not only not new – it’s terribly commonplace. Shapin, like everyone else who parrots this narrative, leaves aside the question of why such a child might self-harm, but let’s not.

A common straw man argument that people use against autistic adults who argue for acceptance is that we are not like those so-called low functioning children and therefore cannot speak for them or even about them with any credibility. This argument assumes quite a lot: it assumes, for one thing, that none of us are parents to autistic children. It assumes that none of us were once non-speaking children who were thought to be “low functioning.” It assumes that functioning is a set of two static, binary categories. And it assumes – and this is so important to point out – that none of the autistic activists fighting for acceptance and equality online, in articles, in blog posts, and on Twitter, is actually non-speaking themselves.

Shapin makes the absurd distinction that “the capacity for independent living is an important factor in whether an individual is held to be ‘high functioning’ or ‘low functioning’.” I’ve also heard it said that the ability to hold a job is what qualifies an autistic person as high functioning. Of course, the ability to live on one’s own and hold a job are things that are only pathologized for disabled people, right? Lots of non-disabled people struggle with those things without being called low functioning.

If you stop to think for even a few seconds about what these labels mean, I think – I hope – you will see how little sense they make. Which label do you slap on a person who does not speak, needs significant daily live-in care, but can write a book? Which label do you slap on a person who speaks fluently, and lives alone, but relies on disability payments for income? I hope that it is obvious how arbitrary it is to qualify a human being’s “functionality” if you really consider it for a moment or two.

Of course, people like Shapin bolster their arguments by dismissing out of hand those who require assistance to use AAC – sometimes called “supported typing” or “facilitated communication” (FC). (The link in previous sentence goes to an awesome post on Unstrange Mind that includes videos of FC users in action.) FC was supposedly “debunked” in the 90s, but that research is now known to have been bad science, and there are many wonderful FC success stories, including that of Amy Sequenzia (co-editor of Typed Words mentioned above) and poet Tito Mukhopadhyay (one of the autistics featured in Spectrum: The Film). By dismissing both the autistics who speak and those who don’t but use assisted typing to communicate, the people who want to discredit the neurodiversity movement get us both coming and going.

Where am I going with this and how does it all relate? I want to return to Shapin’s statement about the searing experience, if you can bear to reread it: “It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.”

By dismissing the voices of those who type to communicate, by erasing the souls of children who do not talk, Shapin and others who perpetuate this kind of narrative dehumanize autistic people. Dr. Ivar Lovaas, the founder of ABA therapy whom Shapin extols in his piece, once said of autistic children, “You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense.” I hope that if you ponder it for even a moment, that quote runs a chill down your spine.

This dehumanization and dismissal of autistics as not-people, as not really there, as soulless, as without thought, is precisely the kind of story – the kind of lie – that leads to abuse and murder of autistic children and adults. We don’t have to speculate that such awful things could happen; they do happen, with disturbing regularity. What sorts of things would people, in their carelessness, callousness, and sometimes cruelty, do to a person whom they think is not really, in any practical sense, there?

Martin Pistorious tells us in Ghost Boy of the awful things that were done to him when he was unable to communicate. He was treated like a thing, like an annoyance, treated worse than an animal, when people viewed him as not-a-person simply because he could not speak.

Aaron Greenwood tells us in Typed Words, “i was never ok with being treated like i needed to change. it is a horrible reality only to have people in power treat you like an object only without asking you or respecting you.”

It’s inexcusable, inhumane, and utterly irrational to persist in the belief that people who don’t speak do not think, when over and over and over again – given access to some usable communication tool – they tell us that they do.

There’s a concept from Disability history called “the least dangerous assumption.” As applied to people with communication differences, including non-speaking autistics, it means that in a very real way, the least dangerous assumption parents, teachers, caregivers, and the public can make about a person who currently is not able to verbally communicate is that they have complex thoughts and feelings just like any other person, but are not yet able to express them.

What harm, after all, could be done by treating this person with respect and assuming that they do understand you, they do feel a wide range of emotions, they do have thoughts and opinions, and that the ways they do communicate – be it laughter, echolalia, screams, or even self-injury – are meaningful? At worst, they never do find a method of expressing their complex thoughts, but have been treated like a human being.

The most dangerous assumption, meanwhile, is that they don’t understand. Their eyes are not windows to any sort of soul. They are people in form but not in substance. Their communications are disregarded as meaningless or rudimentary. Imagine if, all along, a person treated this way understood absolutely everything they were told, understood that people underestimated not only their cognitive abilities but their very humanity, understood that they were seen as less than, damaged, or not even there. Imagine the danger to a soul viewed as soulless.

Imagine how you would feel in that person’s place. Would you feel angry? Would you want to scream? Would you lash out sometimes? Can you imagine something like an inner struggle to express rage without hurting other people that might lead you to self-harm?

The desire to be seen is perhaps the strongest craving in a human being. To simply be seen or heard by another person is the most basic level of communication; and I don’t mean seen literally with the eyes, or heard with the ears, but to be beheld by a fellow human by any means available. To know that you have managed to convey something of your unique self to another person both roots you to the world and frees you. Martin Pistorious did this with only the smallest movement of his eyes at first – and a person who was willing to see him. Aaron Greenwood (again from Typed Words) wrote of his “life’s longing to be part of this world.”

Everyone wants this: a place in the world. And everyone can have it, if we truly listen. 

Image is a photo of the Earth in space, as a background to the text in capital white letters: “Everyone can have this: a place in the wold. And everyone can have it, if we truly listen. eisforerin.com”

My Top Ten Books of 2015

Autism, Books, Neurodiversity

I did not read as many books in 2015 as I usually do, and many of the books I read were graphic novels – so, much lower word count this year, if I were counting. It was hard for me to focus my attention on anything book-length, unless it were especially compelling. As a result, of the books that I did read, there are some real superstars. Here are my top ten, in chronological order.

(Note: book links will now take you to Goodreads, since linking to my Amazon affiliate shop is a pain in the ass and I never make any money on them anyway.)

Nerdy, Shy, and Socially Inappropriate by Cynthia Kim. Although this book talks about “Asperger’s syndrome,” terminology that I reject and Kim later did as well, this is one of my favorite books about being autistic. Like me, Kim found out she was autistic as an adult, after her “work-arounds” in life started to fail and she began to wonder why exactly she was having a difficult time coping. Obviously this is a great book for anyone who has an adult diagnosis (self- or otherwise) of autism, but it’s also really great at explaining the various aspects of being autistic, just in general. She talks about marriage and parenting a little bit, gives a lot of relatable stimming examples, and I believe this book contains probably the best explanation of executive functioning ever.

This Is How You Lose Her by Junot Diaz. Diaz is an author I need to read more, and I’m not sure why I haven’t except that I keep forgetting. This book made me uncomfortable, but in a good way. Yunior, the character at the heart of these short stories, is an asshole and a womanizer, a man I was both drawn to and repulsed by. The writing is raw and honest and has an energy that pulls you in and holds you there.

Blankets by Craig Thompson. Blankets is the book that ignited my passion for graphic novels this year. It’s a beautiful, heartbreaking memoir about falling in love and losing your religion, about dysfunctional families and the exhilarating heartache of adolescence. I loved it so much I wished I had written it.

Schulz and Peanuts: A Biography by David Michaelis. This is a special interest topic so I’m sure not everyone would enjoy this book, but I really enjoyed it, and it was enormous so it took up a lot of headspace for me this year! Despite the way the author seemed disdainful and misunderstanding toward Charles “Sparky” Schulz through much of the biography, I felt that Sparky shone through as a complicated, often lonely person with a deep passion for his cartoons.

Stitches by David Small. Another outstanding graphic memoir, the word that always comes to mind when I think of Stitches is “haunting.” It’s dark and devastating, but beautiful. The genius of this book is in the way the words and images are perfectly interwoven to tell the story; often the drawings take over the storytelling when words simply cannot. I never wanted this book to end.

I Was A Child: A Memoir by Bruce Eric Kaplan. I adored this weird, weird little memoir. Kaplan is better known as BEK, creator of the minimalist, scribble-like cartoons that the New Yorker made famous. What would a minimalist cartoonist write if he wrote a memoir? A series of little moments of memory, small keyhole views of childhood, perfectly described. Thinking about this book makes me want to read it again and again.

Furiously Happy: A Funny Book About Horrible Things by Jenny Lawson. I have to admit that this book just barely edged out some others to make my list. I enjoyed this book a lot, it was funny and entertaining and made me feel good, but it didn’t take over my mind the way the other nine on the list did this year.

Between the World And Me by Ta-Nehisi Coates. It is difficult for me to review or even summarize this book because everything I try to write about it feels small next to the magnitude of Coates’s writing. The book takes the form of a long letter to his son, in which he weaves together his own life story with the larger story of systemic racism – the experience of being black in America. His central argument is that we cannot know how to move forward without taking an honest look at where we’ve been and where we are – but he does this with more elegance and beauty than I can rightly convey.

Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently by Steve Silberman. I had, and still have, a complicated mix of thoughts and feelings about this book. Its strength lies in telling the world the true history of the pathologization of autism and the way the false concept of an autism epidemic came about – the stories of Asperger, Kanner, Lovaas, and assorted historical figures of that era like Bernie Rimland and Bettleheim and such. Many people have correctly criticized him for white-washing, male-washing, and geek-washing the autistic community and wished that he had done a better job of portraying autistic diversity. Over time I’ve come to think that he should have actually cut even more from this book and just limited his scope to his areas of strength – telling the history of autism research. Autistic people can do a better job of describing our own culture.

The Real Experts: Readings for Parents of Autistic Children ed. Michelle Sutton. As a fitting follow up to Neurotribes, here is an excellent collection of autistic people describing their own culture and sharing their experiences of the world. It’s another book that’s hard to sum up, in this case because of the rich diversity of voices and topics it covers, with essays from Nick Walker, Ally Grace, Emily Paige Ballou, Alyssa Hillary, Cynthia Kim, Kassiane Sibley, Sparrow Rose Jones, Michael Scott Monje Jr., Elizabeth J. Grace, Briannon Lee, Morénike Giwa Onaiwu, and Amy Sequenzia, with introductions to each author written by Michelle Sutton. I highly recommend to anyone who is interested in what it means to be an autistic person in the world, from the point of view of those who know best.

Listening to The Real Experts

Autism, Books, Neurodiversity, Parenting

Image is the front cover of The Real Experts: Readings for Parents of Autistic Children, edited by Michelle Sutton. Front cover blurb reads: “Full of practical advice… a landmark book.” – Steve Silberman.

The Real Experts: Readings for Parents of Autistic Children, a collection of essays written by autistic authors and collected by editor Michelle Sutton, is a challenge for me to review. In my efforts to do so, I read through the entire book twice, once just to enjoy it, and then again to highlight my favorite passages. Even so, when I try to sit down and write a review, all I can seem to come up with a bubble of excitement in my chest and a wordless feeling that is kind of like a whole body fist pump, and then the equivalent of a third grader book review: “This book was AWESOME! You should totally read it!”

But why, Erin, tell us why. Yes, I still remember the format: a brief synopsis, then tell us what you think of it and why.

Michelle Sutton is a writer, neurodiversity rights activist, and mother in a neurodiverse family (for those new to the term, neurodiverse means that within her family are a variety of neurological types). She put this collection together by selecting a group of essays and articles, all written by autistic people, as a guide for parents – and other people who know, love, or work with autistic children – but mainly for the parents.

These are the people (or some of them, anyway) whose work and words have guided her in her own journey of parenting autistic children and now she wants to share them with others. I would not, however, want to limit this book only to people with autistic children in their lives, because in my view, it appeals to an even wider audience: anyone who is interested in learning more about what being autistic means, anyone who has a passion for equality for marginalized people, and anyone who cares about disability rights (and really, shouldn’t that be everyone?) will get a lot from The Real Experts. 

The authors in the book (including Sutton herself) are also all people from whom I have learned a lot – about parenting, about being autistic, about activism, about writing, and even about friendship, as some have personally been mentors and friends to me. I can imagine how difficult it was for Sutton to choose only one or two pieces each from the impressive bodies of work these authors have created.

What is covered by The Real Experts, in a purely topical sense, are a range of subjects of interest to everyone with a connection to the autistic community – communication, sensory processing differences, “passing” as neurotypical, ABA therapy, functioning labels, identity first language, disclosure of diagnosis, intersectionality, all kicked off by Nick Walker‘s well known article “What is Autism?” (Link goes to the book’s foreword, republished on his blog.)

Those are all important, useful, even crucial topics, but even those thought provoking questions and answers are only a part of what The Real Experts offers. The rest is the thing that gives me that bubble of excitement that I can’t quite put into words. There is power here. Beauty that almost hurts. Pain that almost heals. Vulnerability so real it leaves you a little breathless. There is love, expanding beyond what the page can contain.

Ultimately, The Real Experts is a book not only about parenting, or autism, or disability, but about humanity. This is a book in which autistic voices call out to the world with strength and clarity: we are here. We are people. We think, feel, love, hurt, and wonder. We thrive when you nurture us, but we will also triumph if you reject us. This is a book that challenges you: we will find our place in the world even if you try to stop us. And it’s a book that invites you: find that place with us.

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The Real Experts can be ordered directly from Autonomous Press, an independent press cooperatively owned by disabled workers. 

Uniquely Human: Book Review

Books, Neurodiversity

Image is the book cover for Uniquely Human by Barry M. Prizant, PhD.

Author Barry M. Prizant is a consultant and “autism expert” who works with the families of autistic children. His new book Uniquely Human is popular in the autism community right now because it proposes “a different way of seeing autism” (per the subtitle), which is that autistic people are not diseased or disordered, but, well, uniquely human.

I have so many mixed feelings about this book it’s hard to know how to approach it in a review or even in recommending it to people in casual conversation. Just looking at the book cover makes me feel a little sad because… is it really “different” to see autistic people as human? This book is striking a nerve with a lot of people, so obviously the answer is yes, this idea that autistic people are human beings who happen to experience the world differently from neurotypical people does sound like a revolutionary message to many readers. His message of compassion is revolutionary. His message that no one should try to extinguish “autistic behaviors” is revolutionary, to many people (not to most autistics, I can assure you).

As with Steve Silberman’s NeuroTribes, I would say that this is on the whole a good and useful book but there are some important critical points that I want to make about it, many of which are about language choices.

One comes up right in the Author’s Note at the beginning, which is about Prizant’s use of person first language (“person with autism”) versus identity first language (“autistic person”). Though he acknowledges that some (I would argue most) autistic people prefer identity first language, he chooses to use person first, without actually explaining why. I wish he had given some reason for this as I find it an odd choice coming from an expert who rejects the pathology model of autism (that is to say, rejects the notion that autism is a disease) and considers autistic people the real experts on autism. To me, “person with autism” always sounds like “person with a disease.” But oh well. Moving on.

Prizant rejects the idea that so-called “autistic behaviors” like flapping, rocking, echolalia (repeating words), spinning things, and so on are symptoms that should be extinguished, but instead are coping strategies to help an autistic person deal with an often overwhelming world. I totally agree with this and love that he says it, but I was little mystified that he also rejected the words “stim” and “stimming” for some of those actions. Those words were once part of the language of pathology but, like the word “autistic” itself, are now reclaimed words in the autistic community. I know lots of autistic people who enjoy talking about the joys of stimming. I felt that Prizant should know this if he really does put the experiences of autistic people first in his research.

Similarly, he rejects the word “obsessions” for the deep, specific interests that many autistic people experience. Again I appreciate that he is trying to move away from the language of pathology, but when replacing negative words I wish that he would use the words of autistic people. Instead, he replaces “obsessions” with a word coined by a parent of an autistic child: enthusiasms. Is it me or is that word a little patronizing? Can you imagine praising Nicolas Tesla for his “enthusiasms” in electricity and engineering? (Not saying many autistic people will be the next Tesla, but, y’know.) Most autistic people I know use words like interests, passions, special interests (another reclaimed phrase), or even – sure – obsessions.

There were other moments in this book when I felt that Prizant was sort of benevolently condescending toward autistic people – I won’t comb through and cite them all. It was just something that popped often enough to make this book problematic for me as a piece of advocacy.

And tying that into my larger qualms about both this book and NeuroTribes, as autistic advocate Judy Endow has written, these books by non-autistic authors and experts seem to be necessary to move the conversation on autism forward because the voices of autistic people are largely still not heard, respected, or trusted as sources of information on autism. That’s a problem and it bothers me. Still, I hold hands with allies knowing that we need them to help us make progress. (It reminds me of how Tim Wise talks in White Like Me about how some white people will only listen to truths about racial justice from other white people, like him, when really black people should be the authorities on their own civil rights, but… reality.)

Which brings me to the GOOD things about this book, in case you thought I wasn’t ever going to get there. Uniquely Human is, in essence, a humane way of seeing autism. Being autistic is a valid way of being and the autistic mind is part of human diversity. “Autistic behaviors” are never meaningless, and parents, teachers, and professionals’ jobs are not to eliminate them, but to understand the person behind them. I felt that Prizant was refreshingly bold in his indictment of autism professionals who do not work with the children in their care, but against them. And he was not Pollyannaish in his portrayals of what the lives of autistic people are like; I think in that regard he probably went a step further (in a good way) than Silberman in showing how autistic people face lifelong disabilities, and will need lifelong support in varying ways and degrees. Not all will become Silicon Valley tech geniuses, but all are valuable, because all are human.

As an operating manual for non-autistic people who care for autistic children, this is surely the best book on the market today. For anyone who is raising/teaching/caring for an autistic child, I would recommend you read this book and give it to everyone else in your life who regularly interacts with that child. But, as with NeuroTribes, after you read this I would highly recommend you move on to reading the words of actually autistic people too – you will learn so much. I am working on a new autistic references section of this blog, but in the meantime a few good places to start for parents and caregivers would be PACLA, Respectfully Connected, and We Are Like Your Child.

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? Not My Favorites Edition

Books

Image is the cover of Acme Novelty Library #20 by Chris Ware; it is a blue rectangle with darker damask stripes on the sides and light blue in the middle, and the word LINT in the center.

One of my friends’ kids’ has a phrase he uses to politely express that he doesn’t like something: “It’s not my favorite.” I love that! So here are some recent reads that were just… not my favorites.

(This post contains affiliate links.)

* The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband by David Finch. This memoir was recommended to me by someone who knows I am autistic and married to someone who isn’t. It had some funny bits – I did enjoy Finch’s sense of humor – but mostly I just found it frustrating. It’s full of unhelpful stereotypes, misinformation, and I was annoyed by both Finch and his wife in equal measure. Finch buys into the myth that autistic people lack empathy; this is just plain wrong – has been proven to be false. I think he’s just an insensitive, selfish dude and the (outdated, wrong, mythical) notion that he’s not capable of empathy served as a convenient excuse for him to behave like an ass. On the other hand, his quest to stamp out his own autistic traits was disturbing and misguided. I shudder to think what ableist people will think when reading this (autistic people can stop being so autistic if they just try harder!). I also kinda wonder why it was recommended to me. Huh.

* Cecil and Jordan in New York: Stories by Gabrielle Bell. A set of short stories in graphic novel form, I wanted to like this book but was frustrated by it so much that I ended up disliking it. Each story started out with promise and pulled me in, but each one ended so abruptly that I did a double take. I don’t mind an ambiguous end if it feels crafted in such a way to imbue meaning, but these just cut off suddenly and left me unsatisfied. There also was a weird misogynistic undertone that I wasn’t sure how to interpret – satirical? Or just dark? Most people on Goodreads seem to love it, though, so maybe I just didn’t get it.

* Best of American Splendor by Harvey Pekar. I loved the movie American Splendor, so I thought I would dig this book, but. Gosh. It was awful. Walls and walls of text on top of visually busy drawings. It was like screamo for my eyes, but like the most boring, banal screamo you could ever imagine, all about making appointments and working as a filing clerk. The best parts were stories about people OTHER than Harvey Pekar but they were too few and too far between. Honestly I just skimmed most of this book. Moving on.

* Blue by Pat Grant. Graphic novel very loosely based on the author’s life, about growing up (white) in Australia during an immigration boom. Three working class kids skip school to go surfing and find a dead body; meanwhile, the immigrants are represented as actual outer space aliens who ruin the little white-people town by being weird and gross. I was waiting for an ending in which things are tied together somehow or the aliens turn out to be people too in some way but it just kind went out on an “immigration sucks” note that was rather baffling. I also felt like I was missing a lot of Aussie cultural references. Oddly enough though, the Afterword to this book was really great. Grant reveals that he is NOT a xenophobic anti-immigrant racist (so why he wrote the story this way I do not know) and offers up some great insights about comics and surfing. So maybe borrow it from the library and just read the afterword.

* Acme Novelty Library #20 (aka LINT) by Chris Ware. I saved the worst for last, as I barely have words for how much I loathed this graphic novel. Graphic novel nerds mostly say that this is a masterpiece, but I found its unrelenting misery and misogyny to be mostly just repulsive. The story of Jordan Lint is a miserable, depressing story about a terrible person who has a shitty life, treats everyone around him atrociously, never redeems himself, and then dies. This grim tale is juxtaposed over Ware’s extremely abstract graphic artwork, reminiscent of a bathroom gender sign, which is certainly interesting, but so dry and airless that it made the story itself feel even more brutally nihilistic. I guess I might see the artistic value in this if so much of it didn’t depend on the sexual degradation of women to fuel its grisly narrative. Just, yuck.

What Are You Reading? Graphic Memoir Edition

Books

tomboy

 

Image is the cover of Tomboy by Liz Prince: a cartoon drawing of wood background and a blue rectangle similar to a bathroom sign, with the symbol of a female body and a frowning girl’s face. Underneath the symbol are the words “Tomboy: A Graphic Memoir by Liz Prince.”

I love graphic memoirs. I love reading them and I want to write one. I’m totally obsessed with getting my hands on any and all graphic memoirs I can find. Pat Grant, (whose graphic novel Blue I actually didn’t love all that much), has written beautifully on how comics are such a perfect medium for telling the stories of one’s childhood and adolescence – they evoke the language of that era of life, tapping straight into the feelings of youth in a visceral and immediate way. These are a few graphic memoirs that I have loved in the last few months.

(This post contains affiliate links.)

* Tomboy by Liz Prince. This is a delightful memoir that’s so funny and genuine and endearing that I just wanted to give it a big hug. Prince tells an edgy but sweet tale of growing up not feeling like other girls, but also not like a boy – she endures confusion, bullying, and lots of social awkwardness as she tries to find her place in the world and figure out who she really is. As she finds her niche in the world of zines and comic artists and finds other people who both defy gender roles and accept her as she is, she learns that gender is more complicated than just being a boy or a girl, and that’s a good thing. Though this may sound like heavy or academic fare, Prince’s gift is her ability to handle big questions with humor and a down to earth charm. Ultimately this book is just about feeling comfortable with being yourself.

* I Was a Child by Bruce Eric Kaplan. I admit I am stretching the boundaries of the term graphic memoir by including this – it really isn’t one. It’s a memoir with small cartoon illustrations on each page. But I feel like I can shoehorn it in because it’s about the kind of material that graphic memoirists use – the important images and scenes from the author’s childhood – and also because Kaplan is a cartoonist, better known as the New Yorker’s BEK. The stories in this book are incredibly stripped down, raw, visceral – as are the illustrations, which look like someone scribbled them in the dark on the inside of a paperback after waking from a vivid dream. It’s hilarious, it’s weird, it’s uncanny. Definitely my favorite of everything I’ve read so far this year.

Smile by Raina Telgemeier. This graphic memoir geared toward the kid/tween age range is immensely popular, and it’s easy to see why. The drawings are super cute and the story manages to be both unique and highly relatable. In the beginning of the memoir, Raina falls and severely injures her two front teeth, which kicks off a very long series of awful, painful, and embarrassing dental work, right at the time when all kids are pretty much at their peak of self consciousness: middle school. I personally have an extreme fear of dentistry (don’t ask me when’s the last time I went), so this read like a horror novel for me, but the tone is so sweet and funny that it entertained even an odontophobe like me (yes I googled that).

A Game for Swallowsby Zeina Abirached. In a memoir about life during the Lebanese civil war of the 1970s and 80s, Zeina relates the story of a day when her parents go out for a short visit to the other side of Beirut and don’t come home for hours – during that worrying time, her neighbors gather in her apartment to comfort her and her brother, and each other, during the bombing. The artwork and the setting are heavily reminiscent of Persepolis – it’s nearly impossible not to make the comparison immediately – but I think that the tone is markedly different, both in the drawings and the storytelling. Abirached has a style that is whimsical and fairy-tale-like, almost reminding me at times of Tomi de Paola’s children’s books. She gives you a feel for the warmth of Lebanese culture that makes you feel as the children must, cozy and cared for in a safe little nest away from the dangerous world outside.

What Are You Reading? A Little of This, A Little of That

Books

I can’t believe how long it’s been since I last did a book post – apparently my last one was in February, so now I’m playing catch-up.

(This post contains affiliate links: book titles are linked to my Amazon Affiliate ID.)

papertowns

* This Is How You Lose Her by Junot Diaz. A series of short stories centered around the life of Yunior, a Dominican American young man living in Jersey – a womanizer, a cheat, a lover and a fighter, an asshole with a tender core. I found it irresistible the way Diaz played with my sympathy and my revulsion for Yunior, as he loved and lost and lost and lost. The juxtaposition of his depth and insight and loneliness with his shallowness and frequent contempt for women felt honest and real. Of course now I have to go find and read the rest of his work, including the Pulitzer Prize winning novel The Brief Wondrous Life of Oscar Wao.

* A Girl Is a Half-formed Thingby Eimear McBride. A very strange book whose stream of consciousness narration begins in the womb, with a fragmented and grammatically chaotic writing style, following the thoughts of a girl through her terrifying childhood, and through her tumultuous and heartbreaking adolescence. I was not surprised to read that the book was inspired by a reading of James Joyce’s Ulysses, which I haven’t actually read myself but I’m familiar with its style. A lot of people find A Girl is a Half-Formed Thing completely unreadable, and I understand why, though I was compelled to see it through and in the end I did find its story to be haunting and provocative. But I am still pretty baffled by the style of it – MY thoughts aren’t that disjointed and chaotic even at the worst of times, so I am not sure why this was the way to tell this tale, except maybe to distance us a bit from the horror and pain of it. Does that sound like a recommendation? I think few people would enjoy this one, but give it a try if you’re looking for something wildly experimental.

* Paper Townsby John Green. This YA novel is very John Green, so if you like John Green, you’ll like Paper Towns. What I enjoy about Green’s books is how well he captures that particular way that adolescence beautifully straddles self-centered, banal fixations and worries, and the biggest deepest questions about humanity and the meaning of life. I agree with the criticism some have made that all of his male narrators are kind of the same, but I’m not too bothered by that as I see the character as a teenage everyman and that works for me. In relation to his other books – THIS MIGHT BE MILDLY SPOILERY – I liked that Paper Towns did not employ the use of a dramatic tragedy to make its point; it was a little anticlimactic but still satisfying.

*Mud Seasonby Ellen Stimson. A memoir about city-slickers from St. Louis who move to small town Vermont and make themselves over as country folks, with mostly disastrous results. Stimson has a folksy sense of humor that sometimes made my teeth hurt, but she dropped enough F bombs into her tale to keep me going. Though she was self-deprecating and played her many failures for laughs, I couldn’t help cringing at how much she and her family behaved like bulls in a china shop in their new hometown – disrupting their peace with their fancy home renovations, buying the general store and running it into the ground (!!!), taking in farm animals with no clue how to care for them, and all the while looking down her nose at the locals. As a girl raised in a small tourist town myself, I often wanted to shake her silly. But I think it’s a fun read for New Englanders and others who can relate in one way or another.

* The Perks of Being a Wallflowerby Stephen Chbosky. This is an older YA novel, published in 1999 by MTV Books (?! who knew) and later made into a movie, which I haven’t seen but now would like to. I have to say I was deeply confused by this book and did not know what I was meant to make of Charlie, the teenaged narrator. He’s not just a wallflower, he’s extremely quirky at the very least – at times astoundingly immature and clueless, at other times implausibly insightful and mature. I could not decide whether Chbosky was writing a wildly out of tune version of what an adult thinks a high school freshman is like, or perhaps a dead on first person view as an autistic teenager??, though autism was never once mentioned. Near the end, an intimate conversation between Sam and Charlie nearly redeemed the entire book for me. I might have to reread sometime.

What Are You Reading? Offbeat Memoirs Edition

Books

Sometimes themes crop up in my reading list without being consciously planted there – I suppose I get on a jag of being into a thing for a while and sometimes don’t even realize I’m doing it. This bunch of book reviews are creative nonfiction works I read in the last couple of months (there were some novels too, but I’ll save those for another post), all a little different from your straight up memoir. I am sure that these found their way to me because I have been thinking a lot about how I would write my own memoir or autobiographical… something.

(This post contains affiliate links, which is to say, if you want to buy any of these books, click over to Amazon and I’ll get a few cents or whatever.)

* Brown Girl Dreaming (Newbery Honor Book)by Jacqueline Woodson. A memoir written in free verse poetry about growing up African American in South Carolina and New York City in the 60s and 70s; somehow I missed that this was a book of poems when I was reading about it. I tend to read fast and it was uncomfortable at first for me to slow down enough to appreciate the free verse form and the lyricism of Woodson’s writing, but like a long and beautiful ballad it slowly moved me. This is a masterful interweaving of the personal and the cultural, stories across generations and geography; even if you never read poetry (as I never do), you should give it a try.

* The Opposite of Loneliness: Essays and Storiesby Marina Keegan. The story behind this book is that Marina Keegan was a Yale college student who wrote for the Yale Daily News, had a job lined up at the New Yorker, and graduated Yale magna cum laude. Five days later she died in a car accident. The titular essay was written for the Yale paper and ironically speaks of how Keegan is ready to begin the adventure of rest of her life. I was worried that the circumstances of her death and almost too exquisite poignancy of her final essay would spoil my appreciation for her work, specifically that I would find it was only published because of the tragedy. But there’s no doubt that her talent shines through the backstory here – the mix of creative non fiction and fiction in this collection is vibrantly alive, pulsing with the intense feeling of late adolescence in a way that is beguiling and wistfully nostalgic (for an old fart like me).

* Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Lifeby Cynthia Kim. I have enjoyed Kim’s blog Musings of an Aspie for a few months now, so I picked up this memoir of her life as an autistic person who went undiagnosed until she was 42 years old – and, as it says on the tin, this is also something of an instruction manual for people seeking to understand autism better. Though it is undoubtedly useful as a “user manual,” I think it’s also an excellent resource for non-autistic people to learn about and better understand the autistic experience. With somewhere around 2% of the general population being autistic, that’s probably useful information for just about anybody – you could have an autistic family member, friend, or coworker and not even realize it. Kim has a way of explaining autism with clarity and simplicity without grossly oversimplifying things that I think is quite well done.

* Blanketsby Craig Thompson. I don’t even know where to begin with Blankets. If I could translate incoherent fangirl squealing into text, that is what I would put down as my book review. This is a graphic memoir, hundreds of pages thick but since it is image heavy it’s a quick read, about a boy who grows up in an emotionally barren family, falls in love at church camp with another lonely and romantic teenager, loses his religion, and – well, there’s no way to sum up the story that does any justice to the delicate beauty of this book. It’s heartbreaking and wonderful and I almost couldn’t stand it because I loved it so much I wished I’d written it.

* Syllabus: Notes from an Accidental Professorby Lynda Barry. Not exactly a memoir but certainly offbeat, this is a kind of published diary from a college professor who teaches creativity classes. Printed in the form of an embellished Composition Notebook (which her students use for their own journals), it includes her own doodles, some drawings from her students, copies of the various exercises and assigned readings, and is a kind of weird, semi-private musing slash course in how to draw and how to think and how to observe and remember. In a nice bit of serendipity in my life, she specifically recommends one of the short stories in…

* The Boys of My Youthby Jo Ann Beard. Yes, Lynda Barry recommended “The Fourth State of Matter” from this Beard book of stories that I was actually reading at the same time. Highly recommended (and also lent to me) by my friend KristineThe Boys of My Youth is series of short creative non fiction pieces. Her writing is a bit hard to describe, but there is a review blurb on the back that says something like ‘now when people ask what creative non fiction is, I can show them this book,’ which I think is the perfect description! Like the poetry form of Woodson’s novel, Beard’s work grew on me slowly until eventually it took me over. Carefully crafted, often languorous and almost dreamlike, somehow she conveys the immediacy of experience, the richness of emotion, and the fog of memory all at once.