Autistic Community, Crabs and the State of My Cardiovascular Health

A friend of mine recently posted a tongue-in-cheek list of the various stages of autistic advocacy. The penultimate stage was “I am avoiding my own community for the sake of my cardiovascular health.”

In my case, it’s funny because it’s true.

I made the decisions to step away from the autistic activist community about a year ago. In that time, I’ve gained some perspective on why I made that choice – and why the number of us avoiding our own community for health reasons keeps increasing.

crabs a year later

1. Teaching 101 classes is exhausting.

My friend’s tongue-in-cheek first stage was utter outrage at regularly recurring events – in this case, at the autistic character cast as a puppet in the stage play All in a Row. A fair number of the responses to said puppet can be summarized as “Nothing this outrageous has happened to us in the history of humanity!”

It has, of course. Dehumanizing portrayals of autistic people in media are ancient hat. They’ve been deconstructed over and over again by members of the community and by allies.

When I started writing on autism, I did so optimistically and enthusiastically. Here was a field in which so much work hadn’t been done, and I was convinced that my doing it would lend itself to genuine progress.

I overestimated how quickly change occurs. But I also overestimated the extent to which my own community would orient itself to its own body of work.

Today, there are dozens of masterposts on nearly every autism-related topic imaginable. A Google search for “autism masterpost” turns up literally dozens, on topics ranging from autistic vocabulary to ABA to how to write fictional autistic characters.

I appreciate people who donate their time and effort to compiling resources. Masterposts are a lot of work. Academic journal articles are a lot of work. In-depth discussions of any topic are work. I know, I’ve written them.

I am not a fan of repeated 101 requests from folks who clearly haven’t Googled – they just perceive me standing there and demand I answer their questions. And it happens a lot.

I have trouble faulting neurotypical people for it anymore when the autistic community has been an equal source of culprits.

2. Trauma is a reason but not an excuse.

Autistic people are, on the whole, a traumatized bunch – and for good reason. We’re born into a world that isn’t designed for our neurology (in fact, it often seems designed to exacerbate our discomfort), and we’re expected to figure out how to survive in it, often while being “treated” with methods that directly impair our survival skills.

So when we first find Autistic community, our trauma often spills over. Which makes sense! For the first time in our lives, we’re surrounded by people who get it! Who have been through similarly traumatizing experiences! Who can affirm that yes, that was traumatizing and you are not weird, bad, weak or wrong for experiencing it as traumatic!

…The problem, which not all autistic people manage to avoid, is that having that trauma affirmed can feel like sufficient reason to avoid the hard work of processing it.

The result are members of the community who do things like:

  • Demand that others mediate their trauma. Seeking help once or twice in a particularly bad situation isn’t a problem; it’s the folks who demand others pay attention to their problems multiple times a day.
  • Maintain that they’re constantly the target of persecution – a stance that gets even more damaging once the person starts accumulating flying monkeys.
  • Develop a sense of entitlement to autistic-run spaces, resources and platforms.

The longer one processes one’s own trauma, the more clearly these patterns emerge, and the easier it becomes to distinguish people who are working on their demons and people who aren’t. It’s easier to see the cost in fucks that the latter impose on the community as a whole – and to go bankrupt.

Trauma explains a lot of these approaches and attitudes. But it does not excuse them.

3. It only took a few people to ruin me for the rest of you.

There’s a version of the trauma/persecution problem that leads to a profound sense of entitlement to autistic-run spaces, resources, and platforms. The rest of the world is against “us” but these things are “us,” so why can’t I just take them? It’s for the good of the community!

I have seen this dynamic play out several times in the handful of years I’ve occupied Autistic spaces.

I’ve seen autistic students blithely poach the work of autistic scholars and pass it off as their own.

I’ve had to file C&Ds as autistic bloggers have reprinted my writing wholesale on their blogs, then dragged me for having the audacity to ask them to stop profiting off my work – or even for asking to be cited as its author.

I’ve seen autistic authors and artists leave the community entirely, pulling all their own work from publication, after being worked to the point of total disability by another autistic person who had an idea but demanded everybody else put in the effort to realize it.

I’ve been publicly dragged by an autistic activist, along with everyone else at Autonomous Press, based on mere hearsay that the activist’s work might not be automatically accepted for publication, and I’ve seen dozens of other community members take that activist’s side without even asking for clarification.

I’ve had autistic writers throw fits in my AutPress email at the news that we do not, in fact, auto-publish your work because you tell us you’re autistic.

There is a small but incredibly loud contingent of the Autistic community that treats the work of other autistic people as theirs for the taking. But when we’re talking about such labor-intensive tasks as writing academic articles, maintaining a blog, or starting an entire publishing company, it only takes a few of these people to burn out and destroy the very resources they’re trying to leverage.

4. Boundaries remain a problem.

Building culture is an exhilarating thing. But without boundaries, culture-building can easily suck you dry. And the same people who insist that your boundaries are hurting them will tell you your inevitable collapse was all your fault for not having boundaries in the first place.

This is the lesson on boundaries a lot of autistic people grew up hearing, especially if we were subjected to ABA or equivalent “therapy.” When you learn very early in life, upon threat of survival, that you are not allowed to have boundaries, acting as if you have none is a very difficult behavior to uproot. For many autistic people, it’s made worse by our own overweening empathy. We want to help, and we have never been taught how to do so without killing ourselves.

Unhealthy behaviors around boundaries are rife in the Autistic community. They’re difficult to uproot. They keep reasserting themselves in different forms throughout our lives without a consistent and dedicated effort to their eradication. And mental health treatment being what it is(n’t), many of us never learn effective tools to combat them.

Boundaries are a huge deal in the Autistic community precisely because we don’t have enough of them. We have a lot of people without them, a lot who drop them because “I found my people so I don’t need boundaries!”, and many who ignore them out of a desire to help, save and protect others from the same trauma they themselves suffered.

As a result, having boundaries can open one up to excoriation in Autistic spaces. I’ve been rebuked for it more than once. How dare I not drop everything and help (with a project, with trauma, with repeating for the 500th time to some parent on Facebook that vaccines do not cause autism) right now (and always, always for free)?! You’re just as bad as the neurotypicals!

There’s a reason the final stage of autistic activism is “lol puppetize me already, maybe I’ll find the energy to fight this shit with a hand up my ass.”

There are extraordinary people in the autistic community. I’ve found lifelong friends, family, colleagues and mentors here. But those relationships only grow when everyone involved in them maintains a commitment to listening, learning, growth, balance, and boundaries.

Without them, this community will continue to burn out its own members, and both its activism and its culture will suffer.

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Work Addiction is a Thing and It F***ing Sucks

Within the last month, I’ve told-all about my struggle with work addiction on Quora not once, but twice. Each time, I had no intention of spilling quite that hard, but I did.

It’s worth talking about.

reat one today!

Despite its etymological relationship to “alcoholic,” the word “workaholic” has almost pride-inducing connotations. An absurdly large number of us are proud to be workaholics. We put it on our resumes. We encourage it in our children. We cite it as the source of our success.

And we absolutely do not see the connection between this behavior and the mass burnout of an entire working generation.

This is why, when talking about my own struggles with overwork, I generally prefer the term “work addiction” to “workaholism.” I don’t want anyone thinking that my lifelong battle is in any way commendable or worth emulating.

Because it’s nearly killed me. Twice.

Workaholism: It’s Not a Party

The first time was in my late 20s, when I was trying to hold down a grueling law firm job with absolutely zero support in any area of my life. Less than zero support: the two people who were nominally “on my side” were incredibly high-maintenance emotional relationships. When the bottom finally did fall out of my life, their only concern was that I might no longer be there for them.

I did three separate stays in the hospital in 2009, ranging from three to seven days apiece.

I quit the law firm job, but I did not quit working. Oh no. I started freelancing.

Freelancing: The Work Addict’s Meth

The big problem with freelancing is that the ability to work anywhere at anytime quickly turns into the obsession that one should be working everywhere all the time. It sounds like paradise for the work-addicted, but it’s incredibly dangerous.

And being able to work everywhere all the time was, somehow…still not enough.

I went to graduate school. I took a teaching assistantship in addition to being a full-time grad student. I started a winterguard program at a school that was an hour’s drive from my house. I joined a fledgling small press.

At age 33, I was in the hospital again.

“How would you describe your problem?” the doctors asked me.

“My problem is that I have four jobs and I need to only have three jobs,” I said.

…The look the doctors gave one another was my first inkling that maybe, just maybe, I had a problem.

WTF Happened?

Billions of people work every day, but not everyone develops an addiction.

There aren’t good worldwide numbers for work addiction, but it appears to range near 10 percent of the working population in most Western nations. One study from Spain found that about 12 percent of the population met the criteria for work addiction. About half of USians consider themselves “workaholics.”

Not all “workaholics” are necessarily work-addicted. Dr. Mark Griffiths has argued that a behavior shouldn’t be characterized as an addiction until it meets six specific criteria:

  • salience (it’s the most important thing in your life),
  • mood modification (it produces a “buzz,” “high” or allays negative feelings like anxiety),
  • tolerance (you need to do more and more of the thing to get the same mood-modifying effects),
  • withdrawal (not doing the thing produces severe negative symptoms),
  • conflict (doing the thing causes problems with personal relationships, gets in the way of other beneficial life activities, or causes intrapersonal concerns)
  • relapse (left to your own devices, there’s a substantial chance you will do the thing again).

I’ve been 6 for 6 basically since I started middle school.

So if workaholism is “doing a lot of work,” work addiction is “I can’t not do the work.”

One of the things that landed me in the hospital the second time, in fact, was that I couldn’t decide which of the four jobs I should quit. It wasn’t just that they all had pros and cons; it was that even thinking about thinking about which to quit caused me so much angst that I simply shut down.

“I should think about quitting one of these jobs,” I’d say to myself.

*BLUE SCREEN OF DEATH*, my brain would reply.

Work addiction occurs when work-centric behavior becomes compulsive. Work begins to feel necessary for survival. Not in the “I need money to eat” way, but in the “if I’m not focused on this project then the tigers will eat me and I will cease to exist forever” way.

Often, work addiction is driven by an underlying issue (or several) that work becomes a means to avoid. It’s more common, for example, in people who are carrying unresolved trauma, either from a single source (like a car accident) or a series of accumulated sources (childhood abuse or bullying, relationship abuse). Work addiction can be the manifestation of a condition like obsessive-compulsive disorder or mania as well.

In my case, work is a way to avoid dealing with a lifetime of abuse, with chronic pain, and with several other things I just plain don’t want to look at. If given the chance, I will literally work myself to death rather than face those demons.

I tried. Twice. Before age 33.

Good Job Not Dying?

Lol, thanks.

Work addiction differs from certain other types of addictions, like alcohol or gambling, because we typically need to work in order to survive. Humans can thrive without ever taking a sip of booze or placing a bet, but we don’t do as well without working. Work is a common, typical, necessary and even healthy human behavior…usually.

So the challenge for me wasn’t to go “cold turkey” from work. It was to figure out how to contextualize work in a way that would also allow me to survive.

For me, that looked like:

Setting boundaries around work time.

“Work time” is now 8 am to 12 am, four days a week. (The 8-12 am slot on Wednesdays is housecleaning time.) I get 16 hours a week to get all my paying work done. That’s it.

As a freelancer, this was an option for me, but it also required me to radically rethink the types of projects and clients I accepted. With only 16 hours a week to do the work and a minimum gross income requirement around $40,000 per year, I can’t take things that pay a penny or two per word. I have to aim higher; I have to brand myself better.

Having to limit my work time forced me to reconceptualize my work content, which in turn changed my approach to work. It’s now a puzzle I only get to solve at certain times of the week. It’s recharged the joy I once found in working and sharply reduced the tolerance load.

Therapy and self-awareness.

I had started therapy about two years before the second hospitalization in 2015. During and after that hospital stay, however, I renewed my commitment to working on the terror of not-working and the reasons behind it.

My reasons are complex and long-lasting. They were baked in during my formative years, so I don’t have a “before” to serve as a benchmark. But digging through them has made work and not-work easier, and it’s helped reduce my risk of relapse over time.

I do lapse. I haven’t wound up all the way back in the work addiction hole, but I do catch myself perseverating over tasks from time to time. While my recent KonMari adventure has been enormously productive both for the organization of my household and for my psyche, there were phases that started to feel very much like my work addiction had. It’s the reason I’ve had to finish the process over time (and why the final blog post in the series has yet to be written).

Doing nothing.

During the second hospitalization, much of my work with my psychologist centered around “doing nothing.” We talked about the life-threatening terror that phrase struck in me. We talked about my absolute aversion to the concept and my intense self-loathing at imagining myself doing nothing.

And then I got ordered to do it.

I made a list of activities that, in my mind, constituted the dreaded “doing nothing.” They were amazingly innocuous.

Reading novels. Taking a walk for the sake of walking (not to run an errand). Playing video games. Scrolling through Facebook. Watching Netflix.

They were, in essence, the kind of things that other people look at and say, “If that’s your definition of doing nothing, then I’m the laziest slug on the planet!”

You’re not, of course; it’s that my sense of what counted as “things I have a right to be doing and still be breathing air and eating food” is pretty damn inside-out.

I was required to schedule two hours a day to “do nothing.” Those two hours had to be at a time I’d normally be awake, and they had to be spent doing something on my list of activities that constituted “doing nothing.”

…At first, I fudged this more than a little. I spent that time reading manuscripts (hey, it’s fiction, right?) or told myself that going for a walk would also count as my exercise time, so it was therefore “productive.” But as a rule, I did a pretty good job of avoiding paid work during this daily two-hour time slot.

Doing nothing has gotten easier since I started. It’s still not easy; it probably never will be. But I appreciate it more now that I see the profound effect it’s had on the quality of my work at other times of the day.

Tl;dr Work addiction is a thing. It sucks. It requires some long-term management and confrontation of some pretty terrible demons. But that effort is surprisingly non-fatal.

 

 

 

Why I Hate the Words “Should” and “Just”

I hate the word “should.”

I also hate the word “just” (as an adverb).

In my book, these two words are profane. They’re worse than any number of slang terms to describe the reproductive or execretory organs or their outputs. They’re shamey, they’re harmful, and they have no place in the vocabulary of anyone who cares about their own or anyone else’s mental health.

I would like to punt them both directly into the sun.

But here: Let me tell you how I really feel.

why i hate should and just

“Should”

“Should” is the Borg Queen of unhelpful words when it comes to mental or emotional health. It’s worthless because it describes a place you are not at. It describes a state of being that you do not have. By definition.

“You should get out more.”

“You should quit worrying so much.”

“You should quit drinking.”

…No, see, that solution is for a different problem than the one I have.

Think of “should” in terms of a map. “Should” isn’t where you are. It’s a different place than the place you are. Maybe that place is awesome! Maybe everyone wants to be there! But you are not there.

“You should get out more” in response to depression, or my all-time favorite “you should get more sleep” in response to insomnia, are exactly as helpful as if you were standing on Woodward Ave. in Detroit and someone said to you, “You should be in Chicago.”

Okay. Maybe Chicago is great. Maybe Chicago has everything you could possibly want or need. But right now, you are in Detroit.

Telling people about Chicago while they are in Detroit isn’t helpful. Here’s what would be:

  • Asking about their satisfaction with their current location. (“Do you like it here in Detroit? Would you rather be in Chicago?”)
  • Helping them identify the steps needed to get to Chicago. (“You’re headed east, and Chicago is west of here.”)
  • Working out a strategy to get to Chicago. (“You can get on I-94 and go straight there, or Amtrak also has trains that go that way.”)
  • Providing resources to help them get to Chicago. (“Do you have a car? Can you afford a train ticket?”)

The same is true when talking to someone who is struggling with their mental or emotional well-being. Saying “you should….” doesn’t help. If they were already where your “should” is trying to send them, they wouldn’t be struggling in the first place.

Instead, find out where they want to go, and see if they want your help to find ways to get there.

“Just”

“Just,” the adverb, often rides along with “should.” Whether it’s together or alone, though, it’s crap.

“You should just get out more.”

“Just stop worrying.”

“You just need to get more sleep.”

If a mental or emotional health hurdle has gotten big enough to negatively affect someone’s ability to function – and I guarantee you aren’t hearing about it unless it’s distressing them in some way – they’re already past “just.” “Just” is somewhere on the other side of the horizon.

If fixing it were “just” that easy, they’d have fixed it already.

To return to the previous analogy, if I’m standing in front of the Cathedral of the Most Blessed Sacrament on Woodward Ave. in Detroit, and I’m distressed by how badly I want to eat some Church’s Chicken, I can “just” walk two blocks and solve my problem. Walking two blocks is not a problem for me, so chances are good that by the time you’re done saying “you can just walk down there,” I’m already in line ordering my lunch.

But if I’m standing in front of the cathedral and nothing will satisfy me except a giant bowl of ice cream from Margie’s Candies in Chicago, telling me to “just walk down there” is not helpful. That’s a 273-mile walk, or about 90 hours, assuming I don’t get hit by a car on M-60.

Instead of “just”:

  • Ask how they’re doing. (“Are you hungry? Do you need lunch?”)
  • Find out what might help. (“Does chicken sound good, or are you in an ice cream mood?”)
  • Offer ways to get it. (“We can drive there, but it’ll take a few hours. Are you up for the trip?”)

I’ve been dealing with mental illness literally as long as I can remember, and one of the hardest parts of recovery for me has been eliminating the words “should” and “just” from my internal and external vocabularies.

They’re tempting to reach for in tough times, because they’re easy. They feel like helping without actually doing the work required to be present in the moment, to understand the problem, and to find and implement adaptive responses.

That’s also precisely why they suck.

 

 

 

Study: 1 in 40 Autistic People Surprised You’re Surprised That 1 in 40 People are Autistic

A study announcing that the autism rate among children has risen to 1 in 40, higher than the 1 in 58 previously estimated by the CDC, is making headlines. Despite the fact that the study authors themselves admitted they were not surprised (a South Korean study put the number at 1 in 38), we’re seeing the usual uptick in “crisis” rhetoric, along with the usual new spate of bizarre woo-based memes.

fancy-chicken-close-up
Chicken Little.

Since leaving activism several months ago, I’ve scarcely kept up with autism news and I’ve commented on autism-related subjects even less. This one, however, stands out to me because of its parallels with a Quora A2A I received a few days ago: “Have you ever shared a bathroom with a transwoman [sic] and what happened?”

The answer to this question is, of course, “I have been in a public bathroom with a trans person before and so have you, and neither of us probably realized it at the time.” Trans people make up 0.6 to 1 percent of the U.S. population, after all. That’s about two million people. Evenly divided by state (which the population overall is not, so neither are trans people), that’s 40,000 trans people per state, or an entire Big Ten university.

The response to the Chicken Littles scurrying in response to the study results is the same: “Autistic people have always made up about 2.5 percent of the population, you just didn’t realize it before now.” That’s about 8 million autistic people, or about 160,000 per state – a midsize metropolitan area.

Natural redheads, incidentally, also make up about 2 percent of the U.S. population. Have you met more than one natural redhead in your life? Statistically, you’ve met that many autistic people as well.

Of course, this answer seems to placate no one. In fact, it most often appears to entrench the speaker further in their anxiety that Things Are Getting Worse All The Time.

Granted, “things have actually been as bad as you think for a while now” isn’t exactly comfort food. For someone whose anxiety is driven by a sense of lost control, “it’s been out of control” doesn’t help and can actually make the anxiety worse.

And questions like “why are all the kids turning autistic?!” or “are there trans people in our bathrooms?!” are very much about a sense of lost control. Autistic people and trans people are seen as threats because of their status as Other. When more of those scary Others start to pop up, many people experience a sense of disturbance to their internal order, their sense of how things should be: Men are men, women are women, everyone communicates in a certain way, and all is right with the world.

Reminders that the world has never actually been that way aren’t great. In fact, they’re kinda horrible.

Of course, not everyone reacts to new information in this fashion. Research indicates that our brains can be structured in ways that correlate with our willingness to embrace difference (and with our political views). The concept of fixed vs. growth mindset explores similar differences from another angle.

For the less-fixed types, “Autistic/trans folks have always been in your life” actually can be comforting. Oh, the world isn’t changing at all; it’s always been like this, and I’ve done just fine so far. For those more comfortable with embracing ambiguity and difference, this statement may even be delivered with an edge of annoyance: We’re here, we’re (neuro)queer, please get used to it so we can stop teaching 101-level classes about how we do in fact exist.

But how do we get past the Chickens Little, for whom “hey, we’ve always been here” is a reason to avoid the 101 classroom instead of entering it? I don’t know. I just know that a lot of our modern anxieties aren’t as diverse as we think.

 

So You Want to Write a Book About Autism

So you think you’d like to write a book about autism. Maybe you’re already writing a book about autism. And, like most aspiring authors, you’d like your book about autism to get published somewhere.  How do you make that happen?

First, the cold, hard truth: whether or not you get published (as opposed to self-publish) isn’t entirely within your control.  The publishers you pitch your book to will have final say over whether or not they accept it for publication, and even then, you may not like the terms they offer.

In this post, I’m going to give you one of the most important pieces of advice you will ever hear as an aspiring author.

so you want autism

This advice comes straight from the mouth of an editor and partner at a small press that hears from a lot of people who have written books about autism.  But I’m not just talking about what we’re looking for.  This is advice that will help you get accepted anywhere you pitch your book.

Here it is: you need to understand the genre in which you’re writing.  To start, you’ll need to be able to answer these questions:

  • What kind of book about autism did you write?
  • What other books about autism are most like your book about autism?
  • Who reads books like your book about autism?
  • How are books like your book about autism used, talked about, and treated by the media?

You don’t need to be an expert on the myriad subtypes of books about autism.  You do need to be reasonably familiar with what’s already out there, and with how your book expands, builds on, supports, or refutes the books about autism that are most like your book.

Why?  Because when you understand how your book fits in to the “big picture,” you can explain it to an editor in your query letter or pitch.  When you explain it well, you answer the editor’s biggest questions: How is publishing this going to help us? and How much work is it going to be to publish this?

I have no idea what kind of book about autism I wrote.  What kind of question is that?

“Books about autism” is a big umbrella.  Here’s a list of the most popular subtypes in the category.

1.  “I am autistic and I wrote about it.”

  • Books that are most like this book: The memoirs of Temple Grandin, John Elder Robison, and Donna Williams.  Tito Mukhopadhyay’s books and Dawn Prince-Hughes’s Songs of the Gorilla Nation also fall in this category.
  • Who reads books like this book: Late-diagnosed autistic people, non-autistic parents of autistic people, people wishing to goggle at a zoo spectacle and feel self-important for doing so.
  • How books like this book are treated: Mostly, like self-narrating zoo exhibits, although there are a few interesting (and obscure) academic articles that consider them more closely.
  • Chances a publisher will take this book: Moderate to poor.  This book was groundbreaking when Temple Grandin wrote it thirty years ago.  Today, not so much.

2.  “I/we am/are autistic and there are important things you need to understand about autism.”

  • Books that are most like this book: Sparrow Rose Jones’s The ABCs of Autism Acceptance, Cynthia Kim’s Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Life, AWN’s What Every Autistic Girl Wishes Her Parents Knew: A Girls Anthology,  Naoki Higashida’s The Reason I Jump.
  • Who reads books like this book: Autistic children and adults; non-autistic parents and professionals who are interested in hearing firsthand accounts of autistic life.
  • How books like this book are treated: These books get much less media attention than “I am autistic and I wrote about it” books, as a rule, unless the author(s) can be reduced to self-narrating zoo exhibits.  Within a/Autistic circles, however, they may enjoy considerable attention and praise.
  • Chances a publisher will take this book:  Pretty good, if you choose a publisher who has already released one or more books of this subtype and you can explain how this book differs from the other major titles of its subtype. 

3.  “I examine or explore autism through an academic, philosophical, or essentially non-fiction lens.”

  • Books that are most like this book: Anne McGuire’s War on Autism, Jordynn Jack’s Autism and Gender, Sonya Freeman Loftis’s Imagining Autism, Steve Silberman’s Neurotribes, Majia Homer Nadesan’s Autism and Representation, Oliver Sacks’s An Anthropologist on Mars, John Donvan and Caryn Zucker’s In A Different Key: The Story of Autism.
  • Who reads books like this: Autistic adults (and some children), researchers of all kinds, some particularly motivated non-autistic parents and professionals.
  • How books like this book are treated: The more academic and in-depth the approach, the less popular attention the book gets, although it may sell well in its circles.  The more journalistic and “human interest” the approach, the more popular attention the book gets, and it may sell extremely well.
  • Chances a publisher will take this book: Extremely good, if the book covers an area that has not been addressed previously and it is pitched to the right publisher.  Remember that academic publishing is an entirely different world from commercial publishing, with different timelines and rules.

4.  “I examine or explore autism through a storytelling, poetic, or similarly creative lens.”

  • Books that are most like this book: Michael S. Monje Jr.’s Imaginary Friends (also Nothing is Right and Defiant) and also The US Book, Mark Haddon’s The Curious Incident of the Dog in the Night-Time, Francisco X. Stork’s Marcelo in the Real World, Joyce Carol Oates’s Carthage, Anne Carson’s Autobiography of Red (probably), Tito Mukhopadhyay’s poetry.
  • Who reads books like this: Autistic kids and adults (depending on the book), some non-autistic recreational readers.
  • How books like this book are treated: Like “I am autistic and I wrote about it” books, these books tend to sell more copies if they reduce autism to a curiosity, spectacle, or self-narrating zoo exhibit.  Books in this genre that portray autism more realistically, however, enjoy a small but intensely loyal following among autistic and neurodivergent readers.
  • Chances a publisher will take this book: Very good, especially if you have nailed the genre in other respects.  (For instance, if you are writing science fiction, make sure you can explain how the book works within the sci-fi genre, as well as how it works as an artistic exploration of some aspect of autism.)

5.  “I am not autistic but I know someone who is and I wrote about it.”

  • Books that are most like this book: Ralph James Savarese’s Reasonable People, Josh Greenfeld’s A Child Called Noah, Clara Claiborne Park’s The Siege and later books.  Several books in the nonfiction and fiction categories, including  Neurotribes, In a Different Key, (maybe) Carthage, and Barry Prizant’s Uniquely Human, fall into this category as well,
  • Who reads books like this: Non-autistic parents and curious others; anyone looking for a zoo exhibit to goggle at.
  • How books like this are treated: Generally, as narrated zoo exhibits.  This is true even though the books’ actual treatment of autism varies wildly (hint: the ones that include the words of the actual autistic person, like Reasonable People, tend to take a much more humane view than those that do not).
  • Chances a publisher will take this book: Unfortunately, much higher than the chances that the same publisher will take an autistic person’s book, unless you choose a publisher who specifically seeks out autistic voices – and sometimes not even then.

6.  “LOL autism.”

  • Books that are most like this book: Clay and Gail Morton’s Why Johnny Doesn’t Flap: NT is Okay!, Kathy Hoopmann’s All Cats Have Asperger Syndrome.
  • Who reads books like this: Autistic kids and adults, non-autistic friends and family members of autistic people.
  • How books like this are treated: While the mainstream media has no idea how to treat these books, they’re generally well-loved by audiences, especially if they turn existing stereotypes on their heads effectively.
  • Chances a publisher will take this book:  Lower than they should be, but still pretty good, especially if you can demonstrate a command of good satire.

So now what?

When you query publishers, or pitch your book, refer to the genre and subtype (not necessarily in the terms listed here).  Mention one or two already-existing books it resembles, and then immediately indicate why your book is different.  For instance, you might write, “While my book is in the tradition of autism memoirs like those of Temple Grandin and Dawn Prince-Hughes, its honest exploration of the gritty realities of growing up an undiagnosed autistic in the projects – including the two prison terms that entailed – makes it stand out.”

As an editor who publishes stuff by autistic people about autism (among other things), my heart would do a little happy dance if that sentence appeared in a query letter.  In three lines, you’ve told me (a) that you know what’s already out there, (b) that you probably have a good idea of who your readers are, and (c) you’re willing to fill a giant gaping hole in available autism memoirs.  Heck yes, I want to read your manuscript!

There’s a lot more to a good query, of course, including the publisher to whom you pitch your manuscript, and I’ll get into that in later posts.  For now, keep in mind that the publisher most likely to take your book is one who has published books in the same subcategory before and seen them sell well.  Your job is to explain (in three sentences or less – editors strongly dislike rambling) how your book both looks like those books and is sufficiently different that readers who read those previous books will still want to read yours.

Is it a tough thing to do?  Well, yes.  Query letters stump even the most accomplished writers.  But hey, you wrote a book.  You can do this – if you know how your book relates to what’s already been written.


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I Want to Believe (In Myself): The X-Files, Star Trek, and (More Than) Autistic Special Interests

There’s a post at Chavisory’s Notebook today that I recommend you read before reading this, because context.  Also so I don’t have to repeat it.  Picture it cut and pasted in this space (except with more citing and less plagiarism).

I was obsessed with The X-Files as a teenager.  Obsessed enough that, unlike any of my prior so-called “special interests,” my family actually knew about this one* and, to a certain extent, supported it.**  Enough that I actually made a couple friends, the first friends my own age I’d had since elementary school, based on our shared interest in the show.

But even to my friends and family, I concealed the depth of my absorption.  I didn’t really understand it myself.  It lasted from a few weeks after the series’ premiere (“Ice,” actually) until just after the first movie- the second-longest-running special interest I’d had until that time.  The first one was Star Trek.

Watching the new episodes has been hard for me.  For one thing, they’re intensely triggering.  It took me three and a half weeks after they began running to convince myself to watch them at all – merely thinking about The X-Files was stirring up all kinds of amorphous emotional crap I thought I had resolved in my teen years but had in fact simply left behind.  Watching the new episodes themselves stirred up more amorphous emotional crap.

I almost didn’t watch “Home Again” at all.  I’m tired, tired of having spent the entire past week in a PTSD fog, tired of trying to figure out how it is that I’ve rewatched all of The Next Generation and Voyager since my teen years without my PTSD making a peep, tired of carrying, always carrying, this trauma.  I can forget about it at times but I cannot put it down.

But of course, the scariest questions are the ones that most need an answer.  And the answer to this one – why Star Trek still excites me to the point that I literally taught a class about the Borg in Voyager last year but why The X-Files is an emotional minefield – is becoming a way in for me to start to unravel the trauma of my teenage years.

I didn’t have the word “trauma” when I started watching The X-Files.  In fact, I didn’t have any words at all for what was happening to me – for what it’s like to go through puberty, without friends, with a mother who insists you pull a perfect Elsa, while autistic but without the word “autistic.”  If I’d had words like “trauma” or “autistic,” I don’t think I could have accepted them.  Not on my own; not without help.  And the help I would have needed to accept them would itself have greatly reduced the trauma.

The words I had were words like weird.  Wrong.  Secretly insane – literally; I believed for a long time that I had what my parents’ 1970s psych textbooks called “childhood schizophrenia”***.  Crazy.  And, yes, spooky.

Both Star Trek and The X-Files stick with me because each of them gave me a vocabulary for who and what I was, at a time in my life when I desperately needed a vocabulary.  They are two very different shows; they generated two very different vocabularies.

Star Trek was (as it has always been) an aspirational vocabulary.  It gave me hope for a world run by and for the benefit of humans in which I, markedly “other,” could be accepted and valued nevertheless – valued for my otherness, even.  This, I think, is why I don’t find rewatching Star Trek triggering.  The Star Trek universe in general, and Deep Space Nine and Voyager in particular, are about places I could belong.  I don’t identify with Barclay but I get Barclay.

The vocabulary The X-Files gave me was more realistic.  The X-Files was, for me, a show about the dangers of being different and the impossibility of being anything else.  It was a show about my reality: about the obliviousness with which most people go through their lives until you scratch the surface of that life, and about the incredible risks that boil out when you do.

As a Facebook friend of mine recently pointed out, autism is not an invisible disability.  It shows in our movement, our behavior, our use of language in various ways.  Difference frightens the human brain, especially when it is close enough to be “just like us” but…not quite.  Freud’s word for it was “unheimlich,” or uncanny.  Star Trek made aliens just like us; The X-Files made them….not quite.

To be uncanny is dangerous.  And we know it.  This is why parents of autistic kids spend tens of thousands on therapies whose only goal is to make the kid appear less uncanny.  Those parents are terrified.  That terror is a survival mechanism.  It arises pre-conscious thought, and so its presence, itself, is not cause for judgment.  It’s what people do once that terror becomes conscious that is a cause for judgment.

Star Trek presumed that humans would “grow out” of that pre-conscious terror of the uncanny, essentially rendering it canny.  The X-Files disagrees.  It does not have a particularly optimistic view of how people will react when faced with the uncanny – or, indeed, how they will react when faced with the idea of the uncanny.  Sure, there are moments, like “Clyde Bruckman’s Final Repose” or Season 10’s “Mulder and Scully Meet the Were-Monster,” that can be remarkably accepting.  But this is largely a show about danger.

It’s also a show about the importance of being right – even when you are wrong.

The X-Files was my anti-ABA.  It taught me that one could get away with being weird or crazy or spooky, as long as one was, at least, not wrong for being so.  It taught me that “weird and crazy and spooky” and “wrong” are not synonyms – that there is a way to be right even while being uncanny.  It taught me that pursuing that sense of being right, even when it made me uncanny as hell, was good.  And it taught me that it was okay to believe that I was maybe not wrong even when the whole world was telling me I was.

That was my fascination with The X-Files, and with Mulder in particular.  I could sound completely crazy but maybe I was not wrong.  

It took over twenty years and four new episodes for that message to sink in.  Like Mulder, I wanted to believe.  But it was not the same thing as believing.

And maybe there would be someone – someone who wasn’t uncanny, who spoke the language that in my wrongness I didn’t speak, someone ordinarily human – who would back me up on this.

*(and still gives me shit about it, as if it were nothing but a garden-variety crush which of course had to have been on David Duchovny and could not possibly have been on Gillian Anderson – but I digress)

**By which I mean “they let me commandeer the VCR to tape episodes and rewatch them until the tapes wore out, and also bought me the show guides, several of the novels, and both “Songs in the Key of X” and the Mark Snow soundtrack,” and also “they did not actively try to stop me being interested.”  They would have said “Oh, The X-Files is her favorite TV show,” as if “favorite” could begin to adequately encompass what that show did for me.

***Turns out I was right: “childhood schizophrenia” was the diagnosis given to a great many people in the mid-twentieth century who actually had – you guessed it – autism.

Emotional Labor, Gender, and the Erasure of Autistic Women

This post was originally published at Autistic Academic.

Yesterday, I stumbled across a listicle at My Aspergers Child, titled “Married to an Aspie: 25 Tips for Spouses.”  As you might expect from a title containing the word “Aspie” and the improbable number “25,” this list was terrible (and did not, in fact, contain 25 tips).  Emma and I unpacked several of its varied problematic assumptions here; I spoofed it on Field Notes on Allistics here, and The Digital Hyperlexic did some more unpacking here.

What I’d like to do now is to discuss the intersection of gender, assumptions about emotional labor, and the erasure or overlooking of autistic women that results.  This is a topic I’ve discussed more than once on this blog in various ways, although I’ve never quite gotten to the heart of the emotional labor question.

What is emotional labor?

Emotional labor is the work done to organize, remember, prioritize, sort, and structure daily lives and relationships.  In short, it’s the effort put into giving a fuck about other people’s thoughts, needs, and desires.  There’s an excellent introduction to emotional labor and the ways it manifests (as well as ways to do it) at Brute Reason here.

The problem with emotional labor, of course, is that generally speaking it is not considered “work” at all.  Rather, women in particular are expected to provide it “out of the goodness of our hearts.”  Emotional labor is actively cast as not-work by being cast instead as a natural urge women simply have – as if, rather than calling on women to generate effort, we’re actually doing them a favor by foisting the world’s give-a-fuck duties onto them.

In cishet relationships in particular, women are raised to, are generally expected to, and frequently end up doing a disproportionate amount of the emotional labor, as this massive MetaFilter thread on the topic attests.  (The days – literal days – it will take you to read the entire thread are wholly worthwhile.)  We cast emotional labor not only as “women’s work,” but as not even work.  Women who fail to put up with “affirmation, forbearance, consultation, pacifying, guidance, tutorial, weathering abuse,” as Jess Zimmerman sums up emotional labor (at the link in the above paragraph), are not only punished for it socially but are in a sense not considered women at all – and the enforcers of this, as N.I. Nicholson also points out (at the Digital Hyperlexic), are frequently other women.  Certainly, as Nicholson also points out, failing to do the emotional labor “correctly” is cast as social and romantic suicide: “no man will ever want you.”

What does this have to do with autism?

Consider, first, how autism in general and Asperger syndrome in particular are portrayed as deficits in emotional labor, specifically.  The DSM-IV criteria for Asperger Syndrome (which differ from the criteria for autism only in their willingness to allow for a broader range of features in speech development) specifically target certain differences, difficulties, or absences in expected displays of emotional labor:

  • marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction,
  • failure to develop peer relationships appropriate to developmental level,
  • a lack of spontaneous seeking to share enjoyment, interest or achievements with other people (e.g. by a lack of showing, bringing, or pointing out objects of interest to other people)
  • lack of social or emotional reciprocity.

The last criteria in this section, “lack of social or emotional reciprocity,” is a demand for emotional labor, full stop.  Emotional reciprocity is the one thing all forms of emotional labor have in common.  The other three are more specific examples of emotional labor: using nonverbals that make the other person feel noticed and attended to, energy invested in “appropriate” relationships, and “sharing” (the ambiguous construction “of interest to other people” in the list of examples, implying “of interest to the patient, pointed out to other people” and “of interest to the other person”, is particularly telling).

It is the lack of “appropriately” displayed emotional labor that leads researchers like Simon Baron-Cohen to cling to the notion of a “theory of mind” deficit in autism and similar developmental disorders.  In In a Different Key: The Story of Autism, authors Donvan and Zucker accuse ASAN founder Ari Ne’eman of “unmistakably” having autism and of possessing no Theory of Mind because, in a conversation with “autism parent” Liz Bell, Ne’eman expressed disagreement with Bell’s position on autism, but did not do the emotional labor of making that disagreement palatable to Bell.

And, of course, “25 Tips for Spouses,” many of which boil down to assumptions that the “Aspie” half of an Aspie-NT marriage is failing to do his (always his, according to “25 Tips”) fair share of the emotional labor, and that this is somehow autism’s fault:

3. Although he genuinely loves his spouse, the Aspie does not know how to show this in a practical way sometimes.
12. Because the Aspie does not have the same relational needs as the NT partner, he may be unable to recognize instinctively or to meet the emotional needs of his partner. Marriages can thus form some dysfunctional relationship patterns.
13. For NTs who had normal expectations of the mutuality of marriage, there may be a sense of betrayal and a feeling of being used and trapped while in a relationship with an Aspie.
15. In the privacy of their relationship, the NT partner may become physically and emotionally drained, working overtime to keep life on track for both of them.

18. NT partners may begin to feel that they are entirely defined by the role they fill for their Aspie partner. There can be a sense that there is little mutuality, equality and justice.
19. NT partners may feel that they are daily sacrificing their own sense of self to help fulfill the priorities of the Aspie partner.
20. NT partners may resent the reality of living on terms dictated by the needs and priorities of the Aspie partner.

Insofar as Asperger syndrome is understood as a deficit of emotional labor, these statements make a certain amount of sense.  But notice how “Aspie” and “man” are perpetually conflated – not only here, but in most dating guides for people with Asperger syndrome (as Emma and I have discussed in previous posts), and in the literature on so-called “Cassandra Syndrome.”  The overwhelming majority of people who claim “Cassandra Syndrome” are non-autistic women married to autistic men, and the fundamental claim is that the man in question has so terribly neglected the emotional labor of the marriage that it has caused actual trauma to the woman.

How Autistic Women Get Lost

Emotional labor is a demand we place primarily on women.  We expect men to do far less emotional labor than women; socially, we tend to punish men who do “too much” emotional labor as excessively “effeminate.”  We expect autistic people to do even less emotional labor – to the point of doing none at all – and we pathologize this lack of emotional labor-doing as both a tragedy and a fault.  Meanwhile, autistic girls and women get lost, both before and after diagnosis.

We know that girls and women don’t get diagnosed with autism as frequently as men and boys.  There have been a spate of articles in recent years on why this might be happening and how to address it.

One answer that has been floated in several circles is that we “miss” autistic girls and women in diagnosis because girls are taught and socialized, from birth, to perform emotional labor.  When the diagnostic criteria for autism spectrum disorder still emphasize deficits in emotional labor, clinicians are looking for lack – not for difference, which is more likely to appear in girls who have been socialized to perform emotional-labor rituals without being given any insight as to their meaning or purpose.

(This, by the way, has nothing to do with whether girls are “innately better” at emotional labor than boys.  It has everything to do with how both girls and boys are raised.  Girls are expected to at least make the effort; boys are not.  Girls, therefore, show up in clinicians’ offices making the effort; boys do not.  While no studies exist yet, I suspect that a study of boys who are raised in households that demand more emotional labor from them also “fly under the radar” of diagnosis more easily than boys who are raised without such demands.)

What of the girls and women who are diagnosed – who are, as I was, probed by clinicans until our difference in emotional labor’s performance becomes apparent?  Well, if you ask the authors of “25 Steps,” we don’t exist – or we don’t marry NTs, or our marriages are never affected by our autism.

(If this last one were true, one would expect a crusade to demand equal emotional labor from boys and men.  Emotional labor “cures” autism!  Except, of course, it does not.)

I’ve written about this question before.  Long story short, autistic girls and women are subjected to the continued demand, attached to our (actual or perceived) gender, to do the emotional labor, no matter what it is, and certainly no matter whether or not we have a developmental disability that specifically lists deficits in emotional labor ability in its diagnostic criteria.  What becomes a convenient scapegoat for men in emotional-labor-lopsided marriages (it’s not him, it’s his autism!) becomes a whiny excuse for women.

This is also why creepy male behavior is excusable with the reasoning “but he might be autistic!,” while curt female behavior is not.  His autism is a reason to pity and excuse his lack of emotional labor; our autism is no excuse to skip out on our expected over-share of the emotional labor.

And this is why there are no “25 Tips” for autistic women married to non-autistic men (like me).  I’m presumed not to need them.  As a woman, I’m presumed to have the (innate or trained) ability to do a disproportionately large share of the emotional labor, to absorb my husband’s disproportionately small share.  (It is also assumed that the shares are lopsided in exactly that way; no one asks how my husband and I have negotiated the emotional labor in our own marriage.)  It is presumed that he will never feel “betrayed,” “used,” or “trapped” by me and my autism, or that he will never need to turn to an Internet listicle for help if he does.  Because I’m a woman, and disproportionate unpaid emotional labor is my birthright.

Thus autistic girls and women get overlooked before diagnosis and erased after it.  Our cultural presumptions about who is able and equipped to do emotional labor make it easy to both diagnose and dismiss autistic men as “just like that,” while blaming and burdening autistic women with “doing it anyway.”  When autistic women don’t “do it anyway,” they’re de-feminized in countless ways.  It’s a lose-lose game.  Crone Island beckons.