Unfurling

Autism, Identity, Neurodiversity

For the past two New Year posts on my blog I’ve gone with a botanical theme: “Green Shoots” in 2014 and “New Leaves” in 2015. Perhaps I should call this post “Flowering,” but then that would leave me with “Gone to Seed” in 2017, wouldn’t it?

Also in recent years I have chosen a word to be my mantra or theme for the year – I was doing this before I knew “One Word” was a thing, which I don’t think makes me extra cool, more like extra out of touch with pop culture. In 2012 my word was PEACE, in 2013 GROWTH, in 2014 TRANSFORMATION, and in 2016 it was KNOWLEDGE. I choose these words in kind of a woo manner, by plucking a word intuitively from my subconscious as it comes to me. They always end up feeling on point, probably in much the way that horoscopes are on point, by being sufficiently vague and universal enough to never not feel true.

This new year I didn’t have a word come to me as such, but more of a feeling. I’m going to call it STRENGTH because I must describe it somehow. I suppose what I am predicting, or at least hoping, is that this year all the upheaval and remaking of my world will solidify and stabilize somewhat into something more cohesive and robust.

I don’t know if you’ve ever seen one of those Internet videos that shows how a caterpillar turns into a butterfly – what happens inside the chrysalis. I probably hadn’t thought too much about it before but if I had thought about what happens to the caterpillar, I guessed it would be sort of like how a tadpole turns into a frog: this part grows, that part shrinks, shapes change, and voilà.

Like most people who saw the video, I was shocked to find out that that the caterpillar breaks down into a kind of goo before it re-forms into a beautiful winged insect. It’s not completely formless, as it still possesses a basic nervous system, but indeed the poor creature breaks down almost completely into a primordial ooze. From that the butterfly assembles itself.

This feels an especially fitting metaphor for me as a person who’s undergone radical transformation and growth, and acquired life altering knowledge in the last few years. I don’t know if the caterpillar feels fear, pain, confusion, or hope as its old form is undone, but – well.

When I was a young child I once saw a monarch butterfly hatch from its chrysalis, inside of a jar that my best friend had kept it in with a sprig of milkweed. My friend gently laid the jar on its side in the grass so the butterfly could walk free on its own. What surprised me then about the animal was how delicate and uncertain it seemed. It was not the triumphant moment I’d imagined in which the butterfly burst free from its shell and flew away. Instead, it emerged slowly, tentatively. Its wings were damp and took some time to unfurl. Its legs seemed a bit frail for the first minutes as it stepped into the open lawn. It took time to rest and gather strength before it could fly.

This is what I envision for myself in the coming year: to unfurl these fragile wings and grow stronger in my sense of self, to begin feel my power in my life, in my work and in my family. I hope that my whole family will feel a new strength and stability this year, to gain confidence in our endeavors and in our connections with each other.

butterfly

Image is a yellow and black butterfly sitting on a green leaf, with the text: This is what I envision for myself in the coming year: to unfurl these fragile wings and grow stronger in my sense of self. – 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.

Kindness Without Respect is Worthless

Autism, Neurodiversity

Two stories co-occurred in my Facebook feed this past week:
*The Autism Cake (link goes to a great commentary by The Crazy Crippled Chick because I can’t ever bear to link you to a news piece calling it “heartwarming.”)
*Abuse at an Adelaide Autism Center  (Australian news story; see full text here: AEIOUabuse.)

I suspect some readers will instantly grok how these stories are interrelated, but let me break it down for you, beginning with the cake.

The story, brought to us by Cake Lady herself, goes thusly, and all the emphases are mine here: Cake Lady walked into a supermarket and to the bakery counter. She asked the person working at the counter to decorate the cake with a Happy Birthday message in icing. “After taking a long time,” the bakery worker presented the cake, Cake Lady smiled and thanked her before looking at the cake, then she looked at it while she walked away and laughed, but, “didn’t really mind that it looked so bad – I thought people would think it was funny.” At checkout, several other employees gathered round the cake, discussed it, took pictures, and finally told Cake Lady that the bakery worker was autistic and “you probably made her day” by smiling at her and saying thank you. The moral of the story, Cake Lady concludes, is “kindness is important.”

Where to begin? There is no kindness in this story at all. Not when Cake Lady smiles and says thank you in an ordinary exchange of goods at a supermarket. Not when she laughs behind the bakery worker’s back and how bad the cake looks – and not when she decides it is redeemed by comedic value for being so badly done. Not when the other supermarket employees gather around to gawk and not when they disclose the bakery worker’s autistic identity to a stranger without her consent so that they can applaud her for having a normal human interaction with a disabled person.

There is no kindness when Cake Lady posts this story to social media, with photos of the cake she finds so comically bad, literally to congratulate herself for “kindness.” (??) There is no kindness in the many many media outlets who published this story as an example of a heartwarming story of human kindness, without ever getting the perspective of the bakery employee, as if she is not a person at all, merely a prop. Which she is.

So what’s all the hype about? The reality is that our society does not value disabled people. We (yes I’m saying “we” because autism is a disability and I am autistic – it would feel weird to say “they”) are seen as dependents, non-contributing entities, demi-humans whose lives are just a weak, broken, inferior version of “real,” “normal” people’s lives. Mostly, disabled people are just flat out ignored.

Insofar as non-disabled people have any positive feelings about us, they are based around condescension and pity: “Oh, that poor person. It’s so inspiring that they _____!” [have a job, were allowed to play for .5 minutes in a basketball game, went on an arranged date to the prom, etc.] “It truly gives me faith in humanity, when a normal person acknowledges the existence of disabled people in any way!” This is called Inspiration Porn. (Link opens a Ted Talk by the kickass comedian Stella Young.)

I see plenty of Inspiration Porn stories – usually they are about disabled people or homeless people, bonus points for both! – but Cake Lady has stuck with me. Why? Because it’s so flagrantly NOT an act of kindness, yet is being lauded as a shining example of goodness in the world. Cake Lady did not do ONE single kind thing in this story – I challenge you to name one! What people are lauding, really, is that: 1) a disabled person is allowed to have a job, and 2) the normals didn’t yell at her for fucking up at work, because 3) they feel bad for her because she is just a poor poor autistic person who probably doesn’t understand anything and it’s a special treat for another human being to SMILE IN HER GENERAL DIRECTION. That, it seems, is more than she deserves.

This story makes me angry and I’m on a long rant about this, but it’s my blog so I’m doing it. I haven’t been able to write in almost three weeks because this kind of shit is just relentless and it weighs on me.

What does Cake Lady have to do with the other story? In Adelaide, Australia, the AEIOU autism center for young children is facing allegations that workers abused some of their young students, leaving bad bruises on their legs – parents suspect that this is related to potty training at the center. These are vulnerable non-speaking children who were not able to tell their parents in words what was happening to them, but they told them by becoming extremely upset about going back to AEIOU each day. The center’s response is to deny, deny, deny. Other parents are rallying to the staff’s defense, claiming that because it didn’t happen to their children, it didn’t happen to anyone.

Autistic children are not respected. They face the double whammy of being children, who generally are not respected by adults anyway, and disabled to boot. Autistic children are very often treated with this kind of “kindness” without respect: they are treated well as long as they are obedient and don’t have too many “behaviors.” Another way to describe this is “tolerance.” As Amythest Schaber said in their brilliant talk at the Richmond Autism Research Fair, “There is no love in tolerance. Tolerance is inequality. Tolerance says, ‘Who you are is different and wrong, but I, as the right majority, will conditionally allow your unpleasant existence to go on.'” 

The punishment for not staying meekly in the mold of the poor poor disabled person who is grateful for the slightest acknowledgment of their humanity is pain, abuse, and sometimes even death. The AEIOU case isn’t even that unusual – as noted in the Autistic Family Collective statement on the case, there had been five separate cases of abuse against autistic children in a 12 week period when the AEIOU story broke – in Australia alone. But this goes on everywhere.


In a world where it is considered a kindness to laugh behind an autistic person’s back instead of to their face and then publicly congratulate oneself for conducting an ordinary business transaction with a disabled person in a polite manner, abuse of disabled persons is a given. It’s a GIVEN. Abuse and murder are the inevitable outputs of a society that fails to have a very basic level of respect for disabled people, that does not even seem to know how to recognize disabled people as fully human – complex, unique people who experience the full range of human emotions that anyone else does (and in the case of many autistic people, an even richer and more intensely felt range of emotion), who are self-aware no matter how old or young they are, who need real human connection and shouldn’t have to settle for tokenism, inspiration porn, and abusive relationships.

I get frustrated, these days, when I see people sharing the Mr. Rogers quote that says, “When I was a boy and I would see scary things on the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.'” This is good advice to comfort children, but for adults it seems to be, more and more, an excuse for doing nothing. It sounds like people are just asking to be allowed to continue to ignore the bad and wrong things, to not have to talk about them. You’re a grownup now. Stop looking for the helpers and be one.

You don’t have to be an activist. I know more than many that it’s hard enough sometimes just to get up and face each day, without feeling obligated to join a war against evil. But I believe in the contagion of ideas as a powerful social change agent. So even if you never join a picket line, sign a petition, write a blog, or even share a Facebook post, you can be a helper by changing your mind. If you’ve gotten to this paragraph, you’ve at least read one blog post by a disabled person, and that’s a start. There are so many others out there. Someday when you’re bored, or maybe right now, you can go to the “Autistic Resources” page of my blog, link at the top bar menu or right in this sentence, and read one more. And that’s just for autistic resources. There is a wealth of voices talking about lived experiences of being disabled, or queer, or persons of color, or in so many other ways the people who are calling out for social justice. Once in a while, hear them. It will change you.

And remember. Kindness without respect for others is worthless at best, and actively harmful much of the time. Kindness without respect is what we already have in abundance: inspiration porn and tolerance. We don’t need more of that.

 

 

I Dreamed of a House

Autism, Identity, Neurodiversity, Writing

Dust particles catch the light, forming a glittering beam that looks solid, spearing the front door through its little square windows and ending in blocks of sun on the rug where we put our shoes. I turn to look outside and press my nose to the top middle pane of the window, touch my lips to the dark wooden sash. The wood always smells like rain and the rain always smells like this window. But it’s not raining now. It’s that time when the sun gets really yellow and loud, and you can’t watch TV because there’s too much glare even if you try to close the long green curtains.

I slide down into the couch and try to arrange myself so I’m sitting upside down, my legs up on the back of it, and my head hanging off the seat. When I’m sitting upside down I look at the ceiling and pretend it’s the floor. The living room ceiling has dark wooden beams across it, and I imagine hopping over them as I run across the room. After a while it starts to feel real, that I really live on the ceiling, and can walk from room to room on all the ceilings and see the whole house from there, looking down, or is it up, at all the furniture, and I start to wonder if I could ever invent suction boots that would let me walk up the walls and right over the ceilings for real. And then I am sad.

I once had a recurring dream about a house. It began in my teens and lasted through the next 20 years; every few months I’d have more or less this same dream: I am in a house, it’s my house but not like my house. I discover that there is space in this house that was always there but I never knew of it before. A secret wing, an attic, a basement – the space is vast, larger than seems possible for a room to be and still be part of my house. Finding this place is exciting and important, the key to everything. I wake feeling that a mystery has been revealed in my sleep, but forgotten as the dream fades.

Around the time I realized I was autistic, I stopped having that dream.

One question people ask when you identify as autistic in adulthood is, why find out now? What difference can it make at this point in your life? The answer is that it makes all the difference, for many reasons. For me it is hard to understand why anyone wouldn’t want to know themselves, but I know for some autistic adults this self discovery isn’t as important, and that’s fine for them.

But there’s also the reality that I can’t wear this old costume anymore. It’s coming apart at the seams and bits of the real me are sticking out here and there, anyway. Since my schoolgirl days people have always commented on my rigid posture, the way I pace when everyone is standing, the way I stand when everyone is sitting, the way when I finally sit down I sit at the edges of chairs, my hands tightly clasped or shoved under my thighs or balled into fists. “Hey, relax,” I’ve been told with a chuckle, too many times to count. “Sit down, you’re making me nervous.” I insist tersely, “I’m fine,” not even realizing. Every atom of my body holding tightly together to muscle my way through it all.

The easy part of it is surprisingly hard, and that’s finding out who I am now. What are my sensory processing differences? One would think that this would be obvious, but when you have lived a few decades not knowing that your perceptions of things are different from anyone else’s – assuming your reactions and responses to everything must simply be wrong – you end up having suppressed not only your reactions to stimuli but also your perceptions. Uncovering these is like unearthing a time capsule, from a time that never was – a time when I was truly myself, when I spoke, moved, felt, and thought with freedom.

Uncovering the natural movements of your own body is uncanny and startling. A lot of autistic people flap their hands when excited or agitated. I don’t flap. Until one day I read a disturbing news story, set down my phone and find myself flapping. And it feels familiar to do this. But where did this come from? It’s not as though I’ve gone looking for ways to act more autistic. By clearing away the dirt and detritus of a life lived trying to be someone else, by peeling away the layers of people that I tried to be, things emerge, unexpectedly.

I had a dream in my adolescence that I was a mummy. I walked down to the water near my house, trying to hide from passing cars in the night. I knelt at the water and tried to tear away the waxy bandages covering my body. But when I did, I found that my heart was exposed, red and beating in my chest. I was afraid. 

Image is a red brick wall with the text: First I must reassemble the foundational building blocks of my world. eisforerin

The hard part of this is disorienting and feels impossible at times: piecing it all together, trying to form a coherent life story for myself. Who I am now is just a moment. It seems important to reassemble the narrative, with this new information. The clues I have are few, because of the way the old stories I told myself distorted reality, and because of the way I’ve simply forgotten the rest, whether by will or by an inability to make sense of it – my brain refusing to allow long term storage to the incomprehensible – I cannot say. Sense memories are the memories that float up when I go dredging up the past, as if to reconstruct my very experience of the world. Feelings come to me – fear, anger, sadness, joy. I want anecdotes, but memory tells me – no. First you must reassemble the foundational building blocks of your world. This is what the sun felt like, this is how the water smelled, these are the sounds that filled the atmosphere.

I have my own bedroom at the back of the house, for a while anyway. The oak trees grow tall at this corner of the property and so it is always shady in the daytime and filled with the sounds of leaves rustling. In summer with the windows thrown open at night, fat junebugs hurl themselves at the screens while I try to fall asleep with a lamp left on, reading in bed. I have a pine wood desk with a tidy desk blotter that makes me feel like it is a real person’s desk where real work is done. I have stationery I use to write to my pen pals, eight pals at once at the peak of my correspondence – my online friends before there was an online. Later in that room I am a teenager and my parents have bought me a brand new oak wardrobe, a beautiful piece of furniture that makes me feel like a real person with a real place to keep my clothing. But one morning before school I have so much trouble trying to choose what to wear that day that I cry in a rage and slam all the doors open and closed and open until one of them cracks, badly, along one rail. I stop. I never tell anyone that I did this. I am ashamed.

Finding other people out there like you when you thought you were the only person like you is also strange, both unsettling and beautiful. When I was a child, I loved the story of the ugly duckling. The ugly duckling, of course, is not ugly at all, but is a cygnet born into the wrong world. Abused by the other animals in the barnyard for looking and behaving “wrong,” he flees the farm and seeks solace in other places, but is repeatedly repelled or put in danger from which he must again run away. He spends a season alone, and in his despair, he finally throws himself before a group of swans, expecting and even willing himself to be killed – but at the same moment, he glimpses for the first time his reflection in the water, and the swans accept him as one of them.

Since I realized I was autistic, I started to have a new recurring dream about a house.

I’m in a house, it’s not mine but it’s one that I have stayed in or am staying in and I’ve fallen in love with it. It’s unconventionally designed, rambling, even vast, with lots of surprising turns and hidden hallways. Each room is unique, quirky, with its own vibrant personality. Other people live here – some of them known to me, some not. They each have claimed their own space, but there are still rooms available. There are multiple kitchens and a huge backyard. Sometimes I am showing this house that I love to other people, showing off its charms. Sometimes I am exploring it alone. I think about moving in, but I hesitate. I love it, but can I live here?

And then I am walking through the house with my husband. We are planning out where the children could stay, how we could make this place safe for them. There is a realtor there, waiting for our decision. We tell him: we’ll take it.

And that’s the last time that I dreamed of a house.

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. 

In Fall We Begin Again

Autism, Identity, Neurodiversity

As the last overly warm days of early fall drift away, things begin to settle. To settle, they first shift, turn, transform, change. I tuck my crisp shorts away in a plastic tub and pull out stacks of thicker, softer things, fuzzy cardigans, lush woolen scarves. My hair seems to change density, into something wispy that floats in the dry air. After an almost-unbearably-hot shower I smear lotions on my legs and arms. At night in bed I fidget, kicking my legs out to try to un-wrap my pajama hems from around my ankles, scratching at one last annoying tiny itch on my nose before I can fall asleep.

Image is a faded photograph of fallen leaves in the grass, with the text, “What has changed in a year, but everything? – eisforerin.com”

This time last year I was finding something out about myself. To go three and a half decades without ever seeing your reflection anywhere and then suddenly to see it is an uncanny feeling – startling, exciting, scary. And not only to see yourself, but to be seen. “I’m not autistic, but…” I said. “Don’t be so sure,” she told me.

Through the holiday season, I had a secret. As I sat at the table eating Thanksgiving dinner with family. As I opened presents with my husband and children on Christmas Day. It felt thrilling but dangerous – a little like being in love. A strange comparison, but it was that urge to tell, a strong desire to share it with the people in my life, while feeling that it was unsafe to do so. That I had something to lose.

Fall isn’t showy like spring, but its changes are no less dramatic. Spring may be the time when everything blooms, when things are born, but fall is a chance to start over. Trees shed last spring’s leaves and rest, flower bulbs nestle beneath the earth, small animals burrow down into hibernation. The air crackles with static electricity and the promise of snow. We slowly shed the self we were this year as we think of who we will be next.

What has changed in one year, but everything? What I have lost is confusion and a feeling of floating. What I have gained is a place in the world.

This year I’ve shed my secret and I am settling. Things are shifting, turning, transforming, changing. Always changing.

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I wrote this post for Autistics Speaking Day. Please see more at the Autistics Speaking Day Blog.

Not In Love With Julia

Autism, Neurodiversity

Everyone might be tired of hearing about Sesame Street’s new autistic muppet by the time I post this, but before I wrote up a full review I had to make my way through all of the materials at the “Sesame Street and Autism” site. I watched all of the videos, either when the kids weren’t around or with headphones while they were otherwise occupied, because I wanted to screen them first before I let them view of it – and, yes, it is weird to have to screen Sesame Street, of all things, for harmful messaging, but such is the state of the mainstream dialogue on autism that I knew there were likely to be some things I would not want my kids to see or hear. And there were.

What is Sesame Street and Autism?

First, a brief explanation of what Sesame Street and Autism is and isn’t. There’s been a lot of hype about Julia, the new autistic muppet as I call her and “muppet with autism” as most of the press does. However, there is no actual muppet. There is one storybook, told from Elmo’s point of view, about a cartoon muppet named Julia. The rest of the site is “Resources for Parents,” which include: 10 videos – I would say 5 were mostly or sort of geared toward children, 5 geared toward parents, ALL geared toward neurotypical viewers; some short articles – 5 out of 6 are for parents, the 6th is for neurotypical children; and Daily Routine Cards, which are like short social stories, that could work for any child.

There is no balanced view of prejudice

For this project, Sesame Street gathered input from a couple of good sources, including ASAN (Autistic Self Advocacy Network) and Boycott Autism Speaks, and some ableist sources, which I prefer not to name because I find that the mere mention of them always derails the Sesame Street discussion into “but why don’t you like them?” and it’s not what I want to talk about here.

The problem for me with this project is that you can’t “balance” autism acceptance and positivity with ableism. The ableism corrupts the message of acceptance and makes it unusable at best, and counterproductive at worst.

Lost opportunity to do good

It’s sad because I really wanted to like it. I think having an autistic muppet IS a good idea and could have been awesome if done well. It would have been great if Julia was a real, felt-covered muppet, was part of the regular cast, and was the protagonist in her own story. It would have been great if she was fully incorporated into the show as just another character.

It would also have been great to do some of the live action videos about autistic kids, if the kids had been allowed to tell their own stories and interact with other kids and/or muppets on their own terms. It’s true that for this age range, there are many autistic kid who can’t yet tell their stories either by talking or by AAC (augmentative and alternative communication), but Sesame Street has always been able to work with typical preschoolers who don’t talk that much yet, so they know how to do this. There is no reason they could not do this with autistic preschoolers besides ableism.

It’s sad because there is a need for children to hear more about being autistic, inclusion, and making friends with people who aren’t like you. There is a need for more representation of autistic people in media and especially in kids’ media, because I would love for this generation of autistic kids to grow up feeling like they are accepted and part of the picture. (I love the Junot Diaz quote about reflection: “if you want to make a human being into a monster, deny them, at the cultural level, any reflection of themselves.”) I would have loved to be able to show my kids a good Sesame Street video about being autistic, but it’s not here.

Where they went wrong: a breakdown

As I said, I watched all the videos and read all of the articles and looked at a few of the Daily Routine Cards on the Sesame Street site. Throughout all of their material, they use “person first language” or PFL (person with autism, so-and-so has autism) rather than “identity first language” or IFL (autistic person, so-and-so is autistic) despite the fact that most autistic people prefer IFL. With that, they didn’t even attempt balance. PFL happens to be a total deal breaker for me. I can’t imagine ever telling my kids that I have autism or you have autism, because in that language, it sounds like I have a disease or a disorder, which I do not. I am autistic, which is the way I am and the way I experience the world.

Even if I could swallow PFL, there was plenty else that bothered me throughout the Sesame Street site. I’m going piece by piece to explain exactly what the problems are because I know that the uninitiated might not see what is “wrong” with this stuff at first glance, but I hope that if you are one of those, after reading this you’ll consider another point of view.

The Amazing Song

“The Amazing Song” was all right, and one of the few things on the site that I put in the “would show my kids” category. It wasn’t great but it wasn’t terrible, which is the highest praise I can give anything here. I love the footage of happy flapping autistic kids and the message that “we are all just kids and we all want to play.” The message of othering is not as prominent here but it’s still present in the lyrics “it’s harder to reach out as others do/ but when you just look closer you’ll see amazingness show through.” Whose point of view does this represent? In the second line it’s clearly the neurotypical person as the default narrator, just as it is in ALL of the material on Sesame Street. Even this song speaks to neurotypical children as the default audience and excludes autistic children. Bummer.

We’re Amazing 1,2,3

This digital storybook is the only place where Julia the autistic muppet appears, as a cartoon drawing. And yet, the book is told entirely from Elmo’s point of view, as he explains the things that Julia does and feels. Given the creative freedom of a fictional cartoon storybook, how is it that even in this format the autistic person can not be the narrator of their own story? Sure, most children are not autistic, but is that a good reason to sideline autistic children into always being the object of the story and never the subject? Sesame Street could, and really really should, do better than that.

Benny’s Story

Benny’s Story is a short cartoon and it is just okay. Aside from using PFL, it uses some positive language about being autistic. But Benny is really separate from the other kids and is never shown belonging to the group. It’s true that autistic kids like playing alone sometimes, but what about when they don’t? This video seems to emphasize being different a little too much. However, it is the ONE video told from an autistic point of view, albeit an autistic cartoon resembling a clothespin with a face. So, there’s that.

Thomas’s Story

This live action video about an 8 year old named Thomas had some great moments – showing how Thomas appreciates the little details of his environment, showing him using AAC to communicate, showing how he uses a service animal on outings.

But the bad moments were really bad, and I think are likely to trigger PTSD in some autistic adults who might watch this video. The worst bits were when Thomas’s dad keeps yanking him down by a leash at his waist when Thomas gets excited around the Abby muppet – I think this leash’s main purpose is to keep Thomas connected to his service dog, but the dad uses it for unnecessary restraints and that’s disturbing. Can you imagine a Sesame Street video where a parent claps his hand over his child’s mouth when the child starts speaking too loudly? – that’s more or less the equivalent of what Thomas’s dad does to forcefully quiet Thomas’s body language. After that, Thomas’s dad corrects how Thomas hugs Abby by taking his arms and moving them to do a hug the “right” way, which is also just yuck. And I wasn’t crazy about having the camera intrude on Thomas’s alone time when he said he needed a break.

But the larger problem with Thomas’s story is that it is told about Thomas by neurotypical people (and muppet). It’s very othering. Thomas has the ability to communicate through AAC; at the end of the video he gets a chance to chat with the muppet Abby, and he has a little back and forth with her. This could have been the main narrative, and should have.

A Sibling Story

Aagh! I just about jumping out of my skin seeing Yusenia’s sisters help physically restrain her so that her parents could brush her teeth and hair. Later in the video we see Jaslyn, one of the sisters, prompt Yusenia to stay calm when she excitedly goes to hug Abby the muppet. This video was aimed at kids but I would never it show it to mine, or really, anyone. Coercion and physical force are not normal parts of an autistic kid’s life.

Being a Supportive Parent

A video aimed at parents, this one featured Yusenia’s dad talking about supporting his wife because in raising an autistic child, “there’s probably not a day that’s not stressful.” (As opposed to life raising typical children, which is nothing but unicorn farts and rainbows from sunup to sundown, right?) The worst part of this one was when they showed footage of a very unhappy looking Yusenia at her 6th birthday party, the first year when she was able to blow out her birthday candle, after years of therapy. The dad is crying as he recounts this milestone, describing her as “typical fingers in her ears, zoning things out,” concluding with “it took her six years of her life to blow out a candle,” which is so dismissive and self-centered and, honestly, anti-autistic, that I just… You know, Yusenia is not sticking her fingers in her ears to ruin YOUR experience of her birthday party, dad, she is doing it to cope with the noise and basically put up with everyone else imposing their preferences on hers, so, get a clue.

Family and Friends

Family and Friends is a story geared toward parents and told by two women who have been friends for years, and now have kids who play together all the time. One of the kids is autistic. I would probably show this to an adult neurotypical friend. It was not terrible and I liked some of the one mom’s statements about battling stigma: “I don’t want to ‘sell’ him to anybody, like, ‘he’s autistic, but….'” Still, given that Louie can be heard conversing with various people in the background of the video, I do not understand why he wasn’t allowed to tell any of his own story. It would have been great to hear a 6 year old autistic boy tell us about his life and his friendships, but as far as I can tell, he wasn’t even asked.

Nasaiah’s Day

This video about a 4 year old autistic kid could probably make my “would show the kids” list but I would have to explain to them that, no, Nasaiah does NOT have to learn to look people in the eye. (Eye contact is a neurotypical social convention but if it makes a child uncomfortable, he should not have to do it any more than wheelchair users should have to “learn” to climb the stairs on foot.) Other than that this was pretty cute and I loved his singing clip with Abby in the end. More like that, please!

Meeting Unique Needs

Here Nasaiah’s mom just talks about her frustrations in raising an autistic kid. Bummer, they seemed nice in the other one. I did not need to see this.

Family Time with Grover

This video was just so odd, I don’t know how to describe it. A lot of it is video of Grover with twin autistic boys and their older neurotypical sister, but that’s intercut with the parents talking about their kids and their parenting strategies, so I don’t know if it’s for kids or for parents. It wasn’t horrible but it was just more of talking ABOUT autistic kids rather than WITH them.

A Parent’s Role

This is a CLASSIC parent complaining video. It’s all about Dad and how hard his life is. “The challenges for me… You don’t get to do what other dads do… [Louie] doesn’t say I love you… It’s tough handling the stress… It’s very stressful and draining on [my wife]…” And then he ends with “it’s been a blessing.”

I’m going to say something I know is controversial, but parents’ complaints about how hard it is to raise an autistic child do NOT need to always be shown. They don’t need to be part of every conversation about being autistic. Parenting is hard sometimes, yes. But this narrative of suffering only strengthens the stigma that autistic people face in the world. It helps NO ONE. Not even the person complaining. And certainly not their child.

Can you imagine Sesame Street making videos of parents of typical children complaining about how difficult it is to raise their kids? Can you imagine Sesame Street doing this with parents of kids with other disabilities? Somehow it is unique to autism that the “parents’ lives are hard” story must ALWAYS be included. It really does not have to be included. There is a time and place to talk about how hard parenting your autistic kids can be, and it’s the same place you talk about how hard parenting your typical kids can be, how hard your marriage can be, how hard your friendships can be – privately, with trusted friends and family.

Read More

There were 6 short informational articles, 5 of them for adults, all of them for neurotypical people about how to interact with autistic children and/or their parents. “Being a Friend” for kids was pretty nice but it was totally geared toward neurotypical kids. There is NOTHING here for autistic kids. They are just erased. This tells me that Sesame Street does not think their feelings and experiences really matter. They never do tell their own stories and they never are addressed directly by the materials here. It’s all about autistic kids, but it’s not for them.

Daily Routine Cards 

Slightly misnamed, these are short social stories about everyday tasks like getting ready in the morning and crossing the street. They work for any young child as reminders and/or “what to expect” stories. They’re the only thing here that actually include autistic children as the part of the audience. So… meh.

The Bad Outweighs the Good

I’m an idealist but I do have a pragmatic streak. I know that massive social changes take time, and autism acceptance is no exception. Is Sesame Street a step forward? I would actually say yes, but only insofar as it is an opportunity to talk more, publicly, about how far we still have to go. It would advance nothing to say “Oh, Sesame Street has an autism initiative. At least it’s something, we’ll take it, let’s not throw stones.” Nope. Throwing stones is also a needed step in order to move autism acceptance forward.

These are my stones. This website is not good. There’s too much that’s bad tipping the scales toward ableism and stigma. I hope Sesame Street listens. I think they can still fix this. Go back to the drawing board (literally and figuratively) with Julia, scrap everything else. Yep, scrap it. You made an autistic muppet, awesome. I love that she does happy flapping and loves to sing. Make her a real muppet. Make her part of the Sesame Street family. Let her talk instead of just talking about her. Let autistic kids see their reflection in her and feel that they are real people too, not monsters. Let them tell their own stories. Sesame Street has always known how to let kids be kids and they can do it again, and they can start now.

We’re Pretty Awesome

Autism, Neurodiversity

You may have heard the saying, “If you’ve met one autistic person, you’ve met one autistic person,” which is meant to emphasize how unique each autistic person is. (In less benign cases, it is sometimes used to shut down criticism about a type of autism therapy or treatment – the autism equivalent of Y’ALL DON’T EVEN KNOW ME.) (Also I know this saying is often worded in person first language but I can’t bring myself to write it that way.) Aside from the fact that I find this a weird saying to begin with (EVERY person is unique, why would anyone expect all autistic people to be exactly the same?), I always want to change the ending. Why just meet one autistic person? If you only know one autistic person, you’re missing out – I know lots, and they are some of the coolest people I know.

So I rewrote the saying and turned it into a design for my Redbubble shop: “We’re Pretty Awesome.” This one is perfect for autistic people to sport on a t-shirt, phone case, or notebook. Clicking on the image below will take you to those products.

Weareawesome

Image has the text “If you’ve met one autistic person… You should meet some more, we’re pretty awesome.” Below that is a cartoon smiling face inside of a box.

Then I also made one for allies, the people who are not autistic themselves but know just how awesome we are: “They’re Pretty Awesome.” Once again click the picture to see the swag.

theyareawesome

Image has the text “If you’ve met one autistic person… You should meet some more, they’re pretty awesome.” Below that is a cartoon smiling face inside of a box.

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.