‘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.” 

#SayTheWord, Not “Special Needs”

Autism, Disability, Education, Neurodiversity

The deeper I go into autistic culture and autistic rights activism, the more I find myself pulled to align my goals, my activism, and my identity with the broader disability rights community.

There’s a social media campaign going on right now to #SayTheWord – it was started by Lawrence Carter-Long, the Public Affairs Manager for the National Council on Disability, and is an active Twitter hashtag. The word, of course, is disabled.

The importance of this campaign is driven home to me over and over again as I see people performing ludicrous and painful contortions to avoid saying it. Reminder that when I make a criticism the way well-meaning people interact with disability, I am not attacking the people (parenthetical reminder that I was immersed in ableism myself not long ago), but inviting people to think about things in a different way.

Instead of saying disabled, nice people say things like:

  • differently abled
  • handicapable (yes, really)
  • physically/mentally challenged
  • special needs

It’s that last one, special needs, that I really want to take aim at, because I believe that seemingly innocuous phrase does serious damage to disability rights.

Every time someone says “special needs,” they reinforce the false notion that disabled people are asking for “extras” when we require accommodations, modifications, and/or support to access the same things that non-disabled people are able to access, such as education, public spaces, community involvement, and so on.

That’s the first problem, because access is not “special” for disabled people. It’s our right. The Americans with Disabilities Act of 1990, modeled on the Civil Rights Act of 1964, protects disabled Americans from discrimination, requires us to be accommodated in the workplace, and grants us equal access to public spaces and institutions. Other countries have laws in place to protect disability rights in similar ways.

The second problem is, the phrase “special needs” flies in the face of the social model of disability. The social model says, the disabled person’s inability to access things is due not to the disabled person’s failings, flaws, or deficits, but on the environment’s failure to provide access to the things. For example, a Blind person is not disabled because they can’t see, they are disabled because the world was set up by seeing people for seeing people and is made of many things that are inaccessible to non-seeing people.

To make a metaphor of it, imagine taking a brand new car and submerging it in a lake. The car is disabled; there’s nothing wrong with the car itself, it still does everything it’s designed to do, but it cannot operate in its current environment. If were in an environment well suited to its needs and purposes, like say a road, it would be able to do all the things a car does.

Or, take a look at this short (1 minute 26 second) animation explaining the social model – it has captions for those who have auditory processing or hearing disabilities.

So, when you say “special needs” instead of disabled, you are saying, this person needs all sorts of special things to help them do what we can do. We, the people who designed the buildings, the curriculum, the programs, the services, so that they are tailored to our needs – we don’t need anything special to access those things. Well of course!

Some people shy away from the word disabled because they feel that it’s stigmatizing. (Some people feel the same way about the word autistic.) But you don’t remove stigma by dancing around it and being coy and hush-hush about it. That actually increases stigma. Disabled is not a slur and never was; it’s a neutral description. I believe that the truth is people are not just uncomfortable with the word, they are uncomfortable with disability itself.

Disability is a normal part of human diversity; somewhere around 15-20% of the human population is disabled. Like other forms of diversity, the presence of disability in the world enriches humanity in ways that we probably can’t even imagine. Being disabled is not something to be ashamed of, and it’s not something to be scared of; it’s just a fact of life.

I #SayTheWord because I believe that only by saying it over and over again, with pride, with confidence, can we accept disability itself. Say it with me.

(Another great post on this topic is Disabled? I Am Legend! by unstrangemind. And if you are on Twitter, be sure to check out the #SayTheWord hashtag, which is full of excellent.)

buy me pizzaImage says “#saytheword / eisforerin.com / disabled not ‘special needs'” on a blue background.

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”

Autistic Culture: A Primer

Autism, Neurodiversity

I’ve put together this post as a list of must read references for anyone seeking to better understand the autistic community. I’ve heard a few people lately say that they wish there were a style guide to autistic acceptance, or that they are worried about saying the wrong thing, or simply that they want to understand the autistic community better.

Of course, “the autistic community” is not a monolith of unified opinions, preferences, or experiences, but there is a thing called autistic culture. And when it comes to autistic acceptance, the neurodiversity movement, and disability rights activism, there are some generally agreed upon principles that make up that culture.

On using Identity First language (“autistic person”) rather than Person First language (“person with autism”). A survey in the UK recently found that 61% of autistic people use the term “autistic person” and only 18% prefer “person with autism.”

  • “Anyone who needs to constantly remind themselves that disabled people are people should probably spend more time examining their own beliefs and less time telling other people how to speak about themselves or their children.” The Logical Fallacy of Person First Language – Musings of an Aspie.
  • ““Autistic” is another marker of identity. It is not inherently good, nor is it inherently bad. There may be aspects or consequences of my identity as an Autistic that are advantageous, useful, beneficial, or pleasant, and there may be aspects or consequences of my identity as an Autistic that are disadvantangeous, useless, detrimental, or unpleasant. But I am Autistic.” Identity and Hypocrisy – Autistic Hoya

What does Neurodiversity mean and what is the Neurodiversity Paradigm? There is a lot of confusion around these terms. The simplest way to understand it is to temporarily remove the prefix “neuro” and see what you have: diversity. Now add neuro back in. The neurodiversity paradigm simply posits that neurological diversity is normal and natural and that non-typical brains are not disordered. But if you want to learn more, read these.

  • “Neurodiversity is a biological fact. It’s not a perspective, an approach, a belief, a political position, or a paradigm. That’s the neurodiversity paradigm (see below), not neurodiversity itself.” Neurodiversity: Some Basic Terms & Definitions – Neurocosmopolitanism
  • “Once we’ve thrown away the concept of “normal,” neurotypicals are just members of a majority – not healthier or more “right” than the rest of us, just more common. And Autistics are a minority group, no more intrinsically “disordered” than any ethnic minority.” Throw Away the Master’s Tools – Neurocosmopolitanism

On Applied Behavior Analysis (ABA) therapies. I know that this is a red hot topic and often I just avoid it altogether for that reason. I’m realistic and I know that most parents embark on ABA with good intentions – after all, it’s said to be the “gold standard” and “only evidence based” autism therapy, over and over again – but I just ask that people listen to autistics on this topic and seriously consider our perspectives. (Also, remember what the road to hell is paved with.)

  • “And there is a good chance that the two of you — the Autistic adult and the parent of an Autistic child — are not even talking about the same thing when you say “ABA.” Major organizations (particularly Autism Speaks) have lobbied hard for Medicaid and insurance companies to cover ABA therapy for Autistic children.” ABA – Unstrange Mind
  • “Why do we not use ABA for the neurotypical population?  This is where the ethical question must be considered.  This is where the “science” behind the use of ABA begins to fray.  If we really believe Autistic people (and children) deserve the same respect, are truly considered equal as those in the neurotypical population, ABA presents some real problems.” Tackling That Troublesome Issue of ABA and Ethics – Emma’s Hope Book
  • “People who can’t say no, can’t say yes meaningfully.” Appearing to Enjoy Behavior Modification is Not Meaningful – Real Social Skills

On functioning labels. Like most autistic people, I completely reject functioning labels (calling autistic people “low functioning” or “high functioning”). They’re inaccurate, ableist, and meaningless (not to mention bafflingly binary!). In the same vein, I also do not use terms like Aspergers, Aspie, HFA (high functioning autistic), classic autism, etc. – they are all just functioning labels in disguise (very poor disguises if you ask me).

  • “This approach does not work and devalues who we are. Besides, the world misses on getting to know our true selves, it misses on learning that there are many different ways to accomplish things, and that definitions like “success” and “independence” are abstract, unique to each individual.” Attitudes: Grading People – Ollibean
  • “One of the central problems of functioning labels is that they presume a uniform set of competencies. Just as neurotypical people aren’t uniformly skilled at everything, autistic people have varying levels of competence in different areas of our lives. For some of us, these levels can be wildly and incongruously varied. They can shift over time, meaning that we might appear to very competent in one area today and much less so a month later.” Decoding the High Functioning Label – Musings of an Aspie

That seems enough (possibly too much?) for an introduction. I hope if you enjoyed any of those blog posts you will read more within the blogs I’ve linked, and as always my Autistic Resources page is chock full of awesome blogs and websites (continually being updated!).

Please feel free to leave a comment or question below, suggest other topics to cover, or suggest more blogs that you think I should read!

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.