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.

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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.

 

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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.

How I Wrote a Novel in 10 Months With Untreated ADHD, Part 3: The Notebook

Part 1, I talked about how I organize my schedule, or when I write. In Part 2, I talked about my workspace, or where I write.

Now let’s talk about how.

ADHD III

Part 3 is the story of the heart of this entire operation: The Notebook.

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“The Notebook” makes it sound portentous, like I spend hours searching for just the perfect vessel to hold my Great American Novel(TM) and I might die without it.

Not going to lie: I went through that phase, in my late teens. I still have the two Moleskines I filled back then. But it was only about eight months before I realized that putting The Notebook on that kind of shrine was actually making it harder for me to write.

These days, I use single-subject college-ruled notebooks I pick up during the back-to-school sale at my local big-box store for about $0.25 apiece. I buy at least a dozen every year, and I keep the unused ones within easy reach:

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Back in the days before I published the vast majority of my work on the Internets, I filled a notebook a month. These days, it takes 1-3 months for the same amount of handwriting.

The used ones occupy several different shelves. This photo is the central repository but by no means the only one:

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Once, in 2009, I went through all the notebooks I’d filled since 1998 and broke them down, discarded everything I thought wasn’t “useful,” and put the rest in a giant three-ring binder. I have regretted it ever since, which is why I will not be repeating the process anytime soon.

It took me quite a while to make the notebook work for me. I loved it from the start as a writing tool, but like a lot of folks with ADHD, I really didn’t grasp how to make it work as a planner and an extension of my memory. For years, I juggled The Notebook, notebooks for work, notebooks for school, a day planner, a to-do list, you name it.

I tried a Franklin planner. I tried OneNote. I tried bullet journaling. And it all made me even more confused.

Then, while browsing the Intertubes one day late in 2015, I stumbled across a system that was far simpler than keeping a bullet journal. The blogger I read this from claims to have learned it from a Japanese businessman he was sitting beside on a flight once.

I just know it works for me. Here’s how:

The very first thing I do with any new notebook is flip to the back side of the final page.

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Here, I write the major categories of stuff in the notebook, and make a little “tab” by blacking in the edge. I like to space my categories widely because it makes the tabs easier for me to find.

Often, I’ll start with the first thing going in that particular notebook. This one, for instance, has outlines for Nahara and The Ambassador on the first few pages, so the top tab is “novel.” The first not-novel page I used had a to-do list on it, so that went under “personal and journal.”

You can tab as many things as you like, or as many as you have lines for. In theory, you could also flip to the second to last page and tab again in different colors, too. I rarely have more than five tabs in any notebook, and these four are always on the list.

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Each page then gets a corresponding tab. Here are the first three pages in this notebook, all of which are outlines.

(I am sorry to report that the rumors are true: Nahara does not feature fully automated luxury gay space communism.)

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Every time I start a new page, it gets a new tab. This is the page I started for the outline for this blog post series.

I love this system for two ADHD-y reasons:

  1. It cut me down to one notebook. Much harder to lose, especially since it lives with my wallet and keys on my desk. (Not impossible to lose, though, which is why my name and email address are always on the inside of the front cover.)
  2. I don’t have to care what order the pages are in anymore. I used to juggle two notebooks because I cared about page order. A lot. I hated having a to-do list pop up halfway through a chapter I was drafting, for instance. I found it super distracting.

Now I don’t have to care, because every page has its tab:

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I also appreciate how the tabs help me see where my time went over the past month or two. This notebook, for instance, makes it obvious that I spent a huge chunk of time on marketing and “outside” writing smack in the middle of it, taking a pretty obvious hiatus from the novel to do so.

Those chunks, btw, include both the pieces I submitted to Spoon Knife 3: Incursions, which you’ll all get to see in a few months.

Here are two pages from the draft of Nantais:

 

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When I sit down to write, I date the margin, just because I like to see my own progress. I tab each page as I start it. Notes about things I need to go back and fix, scenes that are relevant to this scene, or character background I don’t want to dig into here but that I’ll need for consistency later on all goes in the margin as well.

My goal, in my nightly two hour writing slot, is 350 words. That’s it.

They don’t even have to be story. If I’m particularly stuck on the story, I’ll spend time sketching what could happen next, or working out character motivation, or detailing someone’s history or mythology. As long as it’s related to the novel and written with the intent of helping me get unstuck, it counts.

After the Notebook But Before Editing: The Typing Stage

Approximately every ten pages, every chapter, or just when I’m starting to get a little lost as to what the heck happened to get me to this point, I’ll take the handwritten draft and type it up. But the first draft of all my fiction is always written longhand.

 

The reasons are a mix of practical points and straight-up “I like doing it this way so there”:

  • I find the Intertubes distracting as heck. “I went to look up one thing and eight hours later I realized I had 422 Wikipedia tabs open and also it was Tuesday” isn’t a meme; it’s literally my life. If I drafted on the screen, nothing would ever get done.
  • I revise as I type. The first typed draft is always my second draft. Rewriting the entire draft this way allows me to address a lot of mistakes and clunky text. It also lets me do things like write “[nearby star with habitable zone]” in the draft, then Google that when I get to the typing phase, saving me from the Wikipedia hole.
  • I feel free to screw up. Since I know no one will ever see the handwritten draft, I can cross things out, rewrite entire sentences mid-draft, draw giant arrows to move pieces from one place to another, and write things like “FIGHT PIRATES, DO A SCIENCE” or “THIS BOOK DOESN’T EXIST WTF IS HE READING” in the margins (two comments that actually exist in the margins of the handwritten draft of Nantais).

…And, perhaps most selfishly but also most importantly, I just like the way it feels. I like the feel of writing and the look of my own handwriting covering pages and pages of notebooks.

Writing longhand greatly increases my joy in the process. It feels like making something. And that’s really the only reason I need to do it – and the reason I never insist other people do it the way I do.

The whole point of the entire system is to move the crap out of the way in order to find the joy in the work.

Ironic twist: While starting Ritalin has changed my life with regards to my work, my relationships, my ability to eat and sleep, and the general orderliness of my house, it has actually made fiction writing harder. I don’t write on Ritalin. I wait till it wears off first.

Why? I’m still trying to pinpoint the reasons, but the biggest one appears to be that having everything on the whiteboard of my brain at once, while a major challenge in ordinary life, is actually exactly what I need in order to keep track of all the moving parts of a story as it unfolds.

I wrote Nantais before I ever started Ritalin, and now that I have, I only write fiction after it wears off. Go brain!

Part 2: The Workspace
Part 1: The System


Questions: Drop a comment below!
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How I Wrote a Novel in 10 Months With Untreated ADHD, Part 2: The Workspace

In Part 1, I talked about how I organized my time to ensure I had both the gap in my schedule and the mental wherewithal to write every day.

Here in Part 2, I’ll talk about how I organized my writing space.

ADHD II

This is where I write:

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I got lucky in our current house: this desk fits perfectly into this alcove in our spare bedroom. On the walls of the alcove are Chalkboard Left and Chalkboard Right, which I mentioned in Part 1.

You can see some of the paperwork hanging off the bottom of Chalkboard Left in this photo, next to the lamp.

Chalkboard Left contains my weekly schedule; Chalkboard Right contains the basics of whichever novel I’m working on at the moment. Right now, that’s Nahara, the sequel to the novel I just released.

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On the left is the outline for the novel in progress. On the right are some notes I need nearly every time I write, and above those are the list of works I want to write or that come after the novel in progress. (The list on the top right is a recent addition; I got tired of keeping that list in my head.)

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I use Blake Shelton’s “beats” system to outline each novel. It was designed for outlining screenplays, but since I tend to write off the movie screen in my head, the beats system was remarkably easy to adapt.

The outline helps me remember the central theme or idea of whatever point I’m at in the story, as well as how I got that far and what needs to be set up in order to move to the next scene or chapter.

In addition to this outline, I typically write an outline or synopsis of each chapter as I’m working on them. Since I only need those for as long as I’m working on that part of the draft, they live in my notebook (which I’ll cover in Part 3).

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These are photocopies out of my notebook, which I pinned to the board after I got frustrated flipping back and forth between pages and (later) with remembering where I had put this particular notebook. The top one is a bit of core mythology; the bottom is a general outline of all three novels in the trilogy. Behind it are a few more pages I refer to frequently, like main character bios/histories and a timeline.

The list above is works in progress. On the left are short story ideas; on the right, book-length ideas.

Because the desk sits so closely between these two walls, my peripheral vision is pretty well filled up by the chalkboards. But then there’s the view. Take another look at my desk:

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That view is many writers’ dream, but for me, it’s distracting as heck.

One of the main reasons I write from 9 to 11 p.m., aside from the fact that I can focus then, is because it’s dark out. About the only thing I can see is the neighbor’s yard light, which doesn’t light up much – and the neighbor is usually in bed well before dark anyway.

I keep a few fidget toys in the mug along with my pens. The Pygmy Puff to the left of the mug is also a cozy fidget, and the disapproving stare of Mr. McShade on the right keeps me motivated.

Apart from the writing space and the lamp, the desk is allowed to hold only certain items:

  • My wallet and keys. If they’re not here, I don’t know where they are.
  • Things that urgently need my attention. When I took this photo, those included returning a purchase (the small box), sorting out my business receipts (the paper pile), and giving my cat her nightly meds (the pill bottles and the other box).

Other stuff does end up on my desk from time to time, usually on its way to the trash, my backpack, or one of the drawers. The drawers are the nightmare clutter hiding beneath my otherwise sorted desktop.

I do nearly all my novel drafting here and 100% of my novel revision here. I also work from home as a freelance writer, but I do that writing downstairs, in our office/library. Other essential desk stuff, like my noise-canceling headphones, live in my backpack, since I need those out in public more often than I need them at home.

Part 1: The System
Part 3: The Notebook


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How I Wrote a Novel in 10 Months With Untreated ADHD, Part 1: The System

I was diagnosed with predominately-inattentive-type ADHD in October 2017.

I finished writing my first novel in October 2016.

During the ten months I spent writing Nantais, I knew I had significant executive function problems. I’d had them all my life. But I didn’t know I had ADHD. And since caffeine betrayed me by becoming a major migraine trigger in 2015 or so, I wrote the entire novel with no chemical assistance whatsoever.

I want to show y’all how I did it.

In this post, Part 1 of 3, I want to talk about systems. Focusing on systems is more productive for me (and not just me) than focusing on goals – so I put a lot of work into my daily system.

Here’s my system and how it keeps me on track.

ADHD I

1. The Challenges

Like a lot of folks with ADHD, I have terrible time perception.  My sense of time is basically “Now” and “Not Now” – and “Not Now” is a giant black hole from which no scheduled event will ever emerge. Basically, if it’s not in front of my face right now, it doesn’t exist to me.

Because of this, my approach to work has always been to do as much as I can while I can remember to do it. And my results have always been short bursts of productivity followed by long recovery periods.

But writing a novel is a marathon event. It takes slow, steady work over time. “Just write something every day” is great advice – if you are constitutionally capable of doing it. My system makes me constitutionally capable of doing it.

2. The Schedule

On each side of the alcove that houses my desk (more on that in Part 2) hangs a chalkboard. Chalkboard Left contains my monthly, weekly, and daily schedules. It looks like this:

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Chalkboard Right, which is not visible from my bed but which is closer to my chair when I’m at the desk, contains my writing stuff. I’ll talk about Chalkboard Right in Part 2.

Let’s take a closer look at Chalkboard Left’s components.

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This is a typical monthly calendar for me. I made the form in Excel. I usually have two months hanging up at any given time; here, January 2018 is hiding behind December 2017. Since December is almost over, I’ll be making February 2018 in a week or so.

Each of my days is sectioned into five components:

  • M: Morning project. A 3-hour slot from approximately 8 a.m. to 11 a.m.
  • E: Exercise. I prefer to do this between 11:30 a.m. and 1:30 p.m., but scheduled appointments sometimes require me to move it elsewhere in my day.
  • A: Afternoon project. A 2-hour slot from approximately 2 p.m. to 4 p.m.
  • C: Chore. That’s “chore,” singular – one cleaning thing, fix, or errand per day.
  • D: Professional development. Working on the novel goes here almost always.

Although they’re not listed on the calendar, I typically eat breakfast before 8 a.m., lunch between 11 and 11:30, and tea around 4:30. Dinner is usually anywhere between 7 and 10 p.m., depending on when my husband gets home and how fancy we feel like being.

I sleep from 11 p.m. to 7 a.m. Every day. The wake-up time is less a choice than a duty imposed by the Hungry Cat Alarm.

Sleep, meals, and exercise are the three foundations on which the entire system rests. After that come the weekly slots, then the calendars themselves.

Every Sunday, I use the monthly calendar to move things to the board for the week ahead. Here’s what this week looks like:

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When I first starting using this system, I was suffering from chronic overwork. So I made a rule: In any given day, I would do only the five things on the list. If it wasn’t scheduled, I wasn’t doing it.

That one rule has changed my life.

That said, you can see here how some of the categories are flexible. For instance, Monday’s afternoon activity and chore are both “concert.” That’s because herding middle and high school students takes a lot of energy – enough for two ordinary daily activities.

Also, notice that the “exercise” slots don’t say “exercise.” Instead, they list specific things I can do, like “weights,” “rink,” “walk,” and so on. After a morning of work I don’t have the brainpower to pick an exercise. So Sunday Me schedules them ahead of time, freeing up Weekday Me to just go do the listed thing.

Other slots are flexible too. For instance, my “professional development” for Wednesday is “commute.”

Wednesdays are tough for me: I volunteer at the local Humane Society in the morning, then drive halfway across the state to see my therapist in the afternoon (anyone who has ever searched for years for a good therapist instantly understands why I make that drive).

I never have any brainpower left by the end of Wednesday, and I don’t try. Instead, I acknowledge that commuting takes effort by making the commute a separate Thing from the activities I’m commuting to.

3. On the Road

If you have ADHD, you’re probably thinking, “That’s great, but how do you remember this stuff when you’re not at your desk?”

I’m glad you asked.

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This is a Google Keep note that lives on my phone. Once my week is on the board every Sunday, I type it into the Keep note. The Keep note has an alarm attached, so it pops up on my phone screen every day at 8 a.m.

If stuff comes up while I’m away from my desk, I drop it into Keep to add to the schedule when I get home. Since I will definitely forget to add it when I get home, the 8 a.m. alarm reminds me to add it the next morning.

(PS: The initials are codes for various freelance clients. If a code comes up, I check my email for their latest project specs.)

4. How the System Helps the Writing

“Professional development” is a squishy category in terms of time (as is “chore”), but when its set task for the day is writing, it happens from 9 p.m. to 11 p.m. It happens at my desk. And it goes in the notebook.

I’ll talk more about the time and place in Part 2 and the notebook itself in Part 3, because they’re also integral parts of the system. In fact, having dedicated places/tools/containers for particular projects is integral to me getting just about anything done.

Why It Works

The schedule keeps me from exhausting myself. It recognizes that writing takes effort (which is why it gets its own slot), and makes it a priority in my day (you had five jobs and this was one of them!).

The schedule ensures that I can write, making it much more likely that I will.

Part 2: The Workspace
Part 3: The Notebook

 


 

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