Benny, Joon, & Me: An Autism Movie Takes On Ableism & Soundly Defeats It

In 1993, my 19 year old brain latched on to a movie character and wouldn't let go. Now in 2015, I rewatched to find out why. 

In 1993 autism was considered a rare condition that was little understood. Few English-speaking mental health professionals had even heard of its higher-functioning form, Asperger Syndrome, because it wouldn't be in the DSM (Diagnostic and Statistics Manual) for another year.

Nevertheless, writers and actors excel at capturing the human spirit. That year, a movie came out that accurately depicted high-functioning autism and directly combated ableism (harmful beliefs about disabled people) in unambiguous terms.

Benny & Joon is unique. How often are two disabled people allowed to fall in love with each other on the big screen? This may be the only autistic romance movie in existence.

If you are autistic, Benny & Joon offers validation, empowerment, and positive self-image. If you know an autistic adult or child, this movie should add depth to your understanding of them. And if you never expect to meet an autist, well, statistics are against you, but at least watch it to have your heart warmed and your awareness expanded.

It saddens me, however, that certain critics somehow found Benny & Joon problematic. Throughout this post, I will directly answer the points made by one of these reviews. 

Spoiler warning: This review reveals plot points and thematic arcs, but don't worry. The formulaic storyline is already somewhat predictable; the joy is in seeing it played out on screen by interesting characters. You might even enjoy it more by having this autistic lens to view it through.

Why My Brain Latched On and Wouldn't Let Go

When I first saw this movie, I didn't know that 18 years later I would be diagnosed with Aspergers. But my subconscious knew that Joon was like me. I loved Joon. I admired her. I related to her. 

I identified with her odd little mannerisms, and knew that, deep down, I wanted to hold the same flat affect on my face and make those jerky, birdlike motions. Her descriptions of the world mirrored my own strange ways of thinking. Her outbursts and unusual speech patterns reflected an inner persona I was holding at bay, like I had this little bit of crazy locked up inside that escaped sometimes when no one was looking. 

Shortly after seeing the movie the first time, I had a dream. It was of a blond girl, dressed in gray, running nimbly along the top of a castle wall. When she reached the peak, she jumped. 

And I awoke.

I knew instantly that she was inspired by Joon. There was this deep sense that the girl was incredibly smart and talented, and yet she was also mentally immature, restricted, and damaged in some way.

It inspired a novella I wrote about a princess kidnapped into slavery, and her will is beaten out of her. She is rescued in adulthood, but never lost her stunted naiveté juxtaposed against a keen mental acuity. 

When I finished writing, I realized it was an autobiography: a metaphorical account of my own abuse by teachers and peers, an allegory of the way the world misunderstood me and of all the messages from a world that told me I was crazy and broken.

I even borrowed a few decorating tips from Joon.
Colored bottles, knickknacks, brightly colored wispy fabrics.
This is basically my room.

Looking back, I can see just how validating this movie was, and how beneficial it was to my own development. 

Movies like these give millions of undiagnosed autists something to connect to and a way to feel valued when the rest of the world is marginalizing us for being different.

Evidence of Autism

The movie refers to Joon simply as "mentally ill", and doesn't comment at all on Sam's condition. In 1993, "mentally ill" might have been the only diagnosis available for a high-functioning autist. So we're left to speculate.  

The most common armchair diagnosis I've seen online (aside from autism) is that Joon is schizophrenic, and that Sam is "quirky". Perhaps this is because autists are often not thought to be capable of creativity, and since Joon is a painter, she must be schizophrenic? 

So much creationizing!
And paintifying! Look at all that paintifying!

Misconceptions like this pervade both society and the medical community, which is one reason it took me so long to look into Aspergers for myself. Like Joon, I was merely "quirky" with a tendency towards "mental illness" that I kept under wraps. 

So let's clear up the misconceptions. 

Autism traits tend to vary widely from person to person, some even manifesting in opposite ways. Many traits haven't been studied and are not part of official diagnostic manuals. When you read about autism long enough and learn about some of the root causes (like sensory processing issues), you start to notice patterns.

Let's consider Sam first. Here are his autistic traits that jumped out quite starkly:

• Special interest in movies, particularly old movies, particular the silent-film comedian, Buster Keaton.
• Twenty-six years old, with no job, living with relatives, and not functionally literate.
• "Spends all day polishing forks," according to his cousin.
• Struggles with his literacy issues when applying for a job.
• An unorthodox thinker in nearly every regard.

Joon's list is longer; she's on screen more.

• Sudden outbursts, bad enough to chase away housekeepers (aka caregivers).
• Needs things to be just right or she has an "episode".
• Picky about housekeepers. Joon rejects them for a long list of imperfections. One committed sins of metaphor, and another, "her hair smelled". These indicate sensory processing issues and a need for certainty and literalism.
• Seems comforted when she's painting. 
• Particular about food.
• Wears a helmet when riding in the car.
• Shows deep creativity and intelligence but no one takes her seriously.
• Fascinated with fire (for similar reasons why some autists are fascinated by water – watching the flow and movement).
• Doesn't get along with peers (according to her doctor).
• "Her stress level is always a factor in her display of symptoms," according to her doctor.
• Gets hung up on moral details which results in outbursts of anger (moral rigidity).
• "Her routine is everything to her," Benny describes to Sam.
• Notable stimming (self-stimulation, like rocking or shaking a leg) when she's nervous.
• Talks to herself. At some point Benny says that she hears voices, but as it's depicted on screen, it could easily be echolalia, or repetitive vocal stimming.
• Nearly has a meltdown when Sam plays loud rock music (sensory processing). She takes away his radio. Later, she has trouble articulating the experience, particularly what she was seeing and hearing, which indicates that her verbal skills are conditional.
• Kicks Sam out for "cleaning the house." Probably because her things got moved — highly anxiety-producing for many autists.

She has other traits which are more difficult to describe. For instance, she may have a form of synesthesia, which is common in autists, as evidenced by a scene in which she describes how the raisins in her pudding must feel emotionally. Many autists sense that objects have personalities, either to a mild or extreme degree.

There are only two times when she breaks with autistic behavior. 

STOP: Not typical autistic behavior.

At one point, she stands in the middle of the street and "directs traffic" with a ping pong paddle, and acts totally detached from reality. To be very clear, this is not something a typical autist would do, but might be more in line with schizophrenia or bipolar in a hyper-manic phase. 

In another scene, she melts down on a bus in a high-stress situation. Initially, her behavior is in line with an autistic meltdown (including rocking and hand flapping). But as the tension heightens, she becomes paranoid. Such behavior could stem from an extreme meltdown, but not typically.

These exceptions can be explained either by comorbidities (other conditions that occur alongside autism), or as necessary additions to drive the plot. 

A Positive Portrayal

Autistic people are capable of love, happiness, creativity, and agency.

Overall, the film portrays autism in a positive and realistic light, neither overly glorifying it, nor bemoaning our miserable fate. It grapples with real issues that autists and our caregivers or family must face, and manages to frame it in a light-hearted comedy. The theme comes across strongly and can be summarized in this sentence: 

"Disabled people have the right to make their own choices."

The movie represents autists as human and promotes neurodiversity, highlighting the value we can provide to ourselves and those around us, even to those might otherwise see us as useless burdens.

Moreover, Benny & Joon: 

• depicts autists as capable of love and deserving of a love life; 
• depicts autists as capable of happiness, even when we're not "productive" by societal standards; 
• portrays a loving sibling relationship with an autist, where her brother is (for the most part) good to her. (Contrast this to the sibling relationship in Rain Man.)

Romance

The romantic arc truly sets this film apart. It doesn't merely depict a successful autistic love relationship; it goes further, contrasting it to Benny's neurotypical romance with Ruthie.

Chemistry so powerful you can reach out and touch it.

Sam and Joon's chemistry is palpable — innocent and enchanting. They seem to communicate without words. Each seems to have finally found a kindred soul, and, though neither has any experience with love, they take their first steps with grace, with no hint of shame or self-consciousness.

In contrast, Benny and Ruthie's chemistry is awkward. Joon and Sam are far more socially capable (with each other) than the allistic (non-autistic) leads, who are constantly fumbling. Their barriers to love center around miscommunication and a lack of self-awareness. 

Things are just not coming together for these two.
These scenes are literally back to back.

This is a reversal of the standard expectations and it filled me with glee. It reminds viewers that allists can also be poor at social interactions and empathy, even with each other.

I often say that autism is characterized by extreme mental strengths and specializations juxtaposed against extreme mental deficits. Particularly sweet is how Joon and Sam's autistic extremes compliment one another, each filling in the void left by the other's weaknesses. 

In one scene, barely-literate Sam tries to write to his mother. Joon rewrites the letter with hyperlexic skill. 

One of the harsh realities of autism depicted here.
Writing is difficult for many on the spectrum,
whereas it comes easily to others, like me.

She's got problems of her own, though. For instance, she is sloppy and disorganized. He cleans the house with acute, almost obsessive, attention to detail. In spite of her initial distress, she warms to this pretty quickly.

Is Autism A "Disability"? Or A Difference In Cultures

The story argues for what many autists already believe: that most problems associated with autism aren't intrinsically caused by autism itself. They are more often caused by neurotypical expectations that autists are unable to meet, in an environment that is set up exclusively for neurotypical success. 

Every conflict Joon or Sam have is with the world, not with themselves or with each other. Individually, Joon is happy; Sam is happy. And they're happy together. 

All of their problems are caused by allists: the endless stream of housekeepers who can't get along with Joon, the doctor who wants to send Joon to a group home, and the overprotective brother who won't let her make her own choices. It's a world in which their talents — her art and Sam's performance comedy — aren't appreciated — at least not enough that anyone will give them a living wage. 

While Benny and Ruthie struggle to hook up, Joon and Sam progress blissfully and problem-free. No significant misunderstandings, no hidden defensiveness. You get the sense that if they could live on their own little planet, they'd be perfectly functional.

This is a sentiment expressed by many autists. We feel like we were born on the WrongPlanet. Our most distressing symptoms come from living in an allistic world trying to conform to a neurotypical culture.

The application process almost proves to be an unbeatable obstacle,
as it is for many on the spectrum. 

Sam eventually uses his expertise and passion for movies to get a job in a video store. Many autists struggle to feel like their idiosyncratic special interests are useful, but he figures out how to make a living at it. This isn't possible for all autists, but it's at least one role model in a world with none.

It sends a message to society: Don't underestimate us. We have skills. Maybe not the exact skills you want us to have, or we might be rough around the edges, but widen your view and you might be surprised. 

"Patronizingly Adorable" or Patronizingly Keeping Us In Our Place?

Not all reviewers agree with me. Carleen Tibbetts titled her feminist btchflcks.com review, "The Patronizingly 'Adorable' Side of Schizophrenia." As an autistic woman, I found her review patronizingly dismissive, condescending, and ignorant.

The author of the piece is bipolar, which makes her an authority on invisible disabilities in general, but it does not make her an authority on autism. Just to make it clear: being one neurotype does not make you an expert on other neurotypes. I live with a bipolar woman, a couple of OCDs, and another aspie. I'm careful to never assume their experience. 

Even though she concludes that Joon is autistic, Tibbetts insists on using the word "schizophrenic," as if the two neurotypes are interchangeable. It's frankly offensive… probably to schizophrenics, too.

Her lack of knowledge is revealed in a number of places. Most egregious is when she calls Joon's outbursts "tantrums", when she indicates that better meds might help with this and her "erratic behavior". Anyone familiar with ASD would call them "meltdowns," or at the very least, would use non-derogatory terms. They would also understand that, while some meds can help reduce anxiety and lower risk and severity of meltdowns, there is no medication currently that can treat the erratic behavior of autism. Many autists would resist taking such a med out of fear that it would change the very nature of who we are.

This? Is not a "tantrum."

"Tantrum" implies a childish, manipulative call for attention. In reality, a meltdown is a sensory overload that floods our brains with panic or emotional overwhelm, leaving us with little control over our bodies or speech. I tell people a meltdown is like an emotional seizure, and they should treat it like a medical problem. It's poor allyship to perpetuate this marginalizing stereotype.

Her review flies under the flag of false advocacy. Her outrage at Benny & Joon reminds me of the Derpy Hooves controversy, where parents of developmentally challenged children found the My Little Pony character offensive, and protested to get her edited out of the show. In contrast, the majority of actual autists felt personally attacked. A character we related to was made invisible by our supposed allies. By deleting Derpy, they deleted us.

Save Derpy

I dare you not to cry.

The organization Autism Speaks does the same thing in the name of autism advocacy. As does Ms. Tibbetts in this review.

These patronizing, chivalrous, well-meaning allies are Disability Ventriloquists, because they think we're dummies and they try to speak for us. We remain dehumanized, pawns without agency, moved around on the chessboard by whoever speaks for us the loudest. 

I am not your dummy.
#ActuallyAutistic

But I'd like to thank Ms. Tibbetts for being wrong, because she provides a good counterpoint for a detailed look at what this movie does right. 

Too Adorkable? Oh noes!

The Bitch Flicks review takes greatest issue with how Benny & Joon presents autism: 

"There is NOTHING 'adorable' about mental illness… [This movie] trivializes and downplays a serious, crippling disorder." 

Ahem. 

First, autism is not a "crippling disorder," which is a point made within the film itself when Benny repeatedly underestimates Joon's and Sam's capabilities. For Bitch Flicks to perpetuate this stereotype in the face of a film that attempts to dismantle it is the pinnacle of ablism.

Secondly, Benny & Joon is a comedy. Its job is making us laugh.

Nevertheless, the darker aspects of autism are explicitly portrayed. Benny's life is severely impacted by having to take care of his sister. Sam is grateful to sleep on Benny's couch because his cousin had him sleeping under the sink. Joon nearly burns the house down a couple of times. One of her meltdowns is so uncomfortably and realistically depicted on screen that tears came to my eyes. 

This living situation is an improvement over
sleeping under the sink.

Autistic life sucks, and this movie gives us glimpses of these harsh realities lurking there beneath the surface.

But life as an autist is awesome, too. We are quirky, fun-loving, talented. Yes, we can giggle and paint and be silly. When we're given full freedom to express ourselves, life is an absolute joy to live, both for us, and for our loved ones.

Should we be condemned to misery, even in fiction, because disabilities are Serious Business? Are we to only have depressing horror films made about us? Is neurotypical society only allowed to see what a burden we are, and how unredeemable and useless we are? Are we supposed to have every light-hearted happy-ending stricken from our collective consciousness?

If I need to see the untarnished details of the most horrific aspects of being "abnormal", I'll watch Melancholia, Girl Interrupted, Heavenly Creatures, or Silence of the Lambs. Or I'll just read my twitter feed for about 15 minutes. Or visit some of my own worst memories.

Problematic? You Don't Get How Stories Work

Some social justice media critics think that if any character acts badly, the whole story is problematic. 

I want to destroy that idea right now. 

Ka-boom.

Problematic behavior exists in real life, and it therefore should be depicted in fiction.

Why? Because those who experience these situations in real life need something relate to. And those who commit harmful behaviors need to see the harm they cause. 

I wish more social justice champions understood how how plot and theme work. Here's a quick rundown:

As Robert McKee points out in Story (a how-to book for screenwriters and novelists) a theme is an argument between two opposing values, which builds, until it reaches a final conclusion. 

It's a debate: a fictional argument. You have to show characters acting in opposition. Who will turn out to be right? The story must depict the tragic results of acting on the opposing value. If no character behaves badly, the conclusion will ring hollow. 

If you make a movie to combat ablism, you must depict ablism. To make a movie combatting sexism, you must portray sexism. To make a movie against racism, you've got to show some racists. Otherwise, you have a boring, unconvincing movie where nothing happens. And if we successfully remove these types of problematic content from our fiction, our movement will fizzle out and die.

Combatting oppresssion
through the power of creativity

So the real proof of a problematic story is in its ending. 

We can tell by the ending that the theme of Benny & Joon is, "Developmentally disabled people are capable of, and have the right, to make their own choices." 

The movie refuses to justify Benny's abuse of Joon and Sam. It condemns his behavior and then offers him redemption in a very simple form: Stop treating your sister like a child. Let her grow up and follow her own path.

An ableist movie would have sent a smiling Joon off to live safely ever after in an institution. The theme would concluded: "Disabled people cannot think for themselves, so they should live out of sight lest they offend our sensibilities or hurt someone."

Sadly, it seems that Ms. Tibbetts might have preferred that message.

What Seems Problematic Is Actually Good Storytelling

Benny has taken care of his sister since their parents died. He resists putting her in a group home because he thinks she won't be happy there, and he wants her to have some level of independence. This is admirable.

But he isn't perfect. He is patronizing and overprotective. Moreover, he's in the difficult position most caregivers are: It's hard to care for someone with special needs. It sets limitations on his free time, money, social life, and energy. He's under a constant emotional drain.

According to Tibbetts, "Benny & Joon deals far more with Benny’s 'unfortunate' situation of having to care for his sister than it does with Joon herself. Yes, although it does speak to Joon’s creativity, her spirit, etc., it doesn’t address the fact that Benny's kept her infantilized most of her adult life." 

Firstly, the stress of caregiving shouldn't be so flippantly dismissed. It's clear in this movie that Benny simultaneously loves his sister, enjoys her company, and is becoming resentful of the distress she causes him. This is a realistic situation, and an understandable reaction. As an autistic mother with autistic children, I know this all too well.

Secondly, the movie does far more than address Benny's well-intentioned but misguided mistreatment of his sister. This is, in fact, the whole point of the movie, as is shown through dialog, over and over again. 

For example, Sam has been pursuing a job at the video store, where he hopes to capitalize on his special interest. But Benny thinks Sam should make a living as a performer. Sam resists this idea, and in the confrontation, Benny and Joon discuss Sam like he isn't there: 

This is what addressing ableism looks like.
Benny comes off looking like a big huge jerk in this scene.

"What is your problem?" Benny asks Joon. "This is his chance to do something, be somebody."

"He is somebody," Joon replies.

"Yeah, I know, but he wants to be more."

"You don't know what he wants."

The argument for autistic agency couldn't be any more clear. Joon is addressing Benny's tendency to infantilize Sam, and by extension, her. And since she's a strong female protagonist, she stands her ground against the onslaught.

Then Joon turns and invites Sam into the conversation, and the couple tells Benny, in not so many words, that they're "together". 

Right on cue, Benny blatantly denies Joon the agency to choose who she loves. He violently kicks Sam out of the house. When she defends her rights, he becomes physically violent with her and decides he's going to send her to the group home, because she can't make good decisions.

Here she is robbed of agency in a very literal way: In the home, she will have no freedom or independence whatsoever. 

Benny, after their fight: "Can I get you anything?"
In my head canon, Joon replies, "Yes. A new brother!"

Benny's attitude is ableist and misogynist. It's the well-meaning paternalism that mentally and physically disabled people have come to expect from real people everywhere. 

Ms. Tibbetts can't seem to see how she, too, reflects this attitude in her review, or how it denies us freedom, agency, love, and the ability to be represented with these qualities. She tries to speak for us in the same way Benny speaks for Sam and Joon, an allist who assumes she knows what we want, what media we should or shouldn't relate to or find meaning in, because she knows what's best for us. 

And that makes her a Disability Ventriloquist.

This scene further drives home the point that our greatest problems come from allists who continually try to force us into unnatural and unfulfilling ways of being: whether it's in career direction, institutions, rigid social expectations, abusive teaching techniques, or through certain abusive therapies.

In a later confrontation with Sam, Benny becomes even more abusive. His behavior crosses the line into bullying territory as he is both violent and verbally cruel to Sam: 

"You wanna know why everyone laughs at you, Sam? Because you're an idiot." 

The comment stings in this context, and the word carries with it the harsh power it once had before it started being so casually tossed around. The same hurtful power the "R" word still carries. 

Just to be sure he's clear, Benny puts all the venom he possibly can into his voice and follows up with, "You're a first class moron."

Oh no. You did NOT just say that.

In response, Sam displays that uncanny human insight that we autists are often capable of. He looks past Benny's aggressive outward behavior and pinpoints Benny's deeper issue: "You're scared," he says. Then he asserts his agency and condemns Benny: "I used to look up to you. Now I can't look at you at all."

Sam's simple statement stops Benny. In that magical Hollywood moment, Benny realizes how he's mistreated Joon. 

As soon as he sees her, he lets go of her, offering her autonomy, a chance to live on her own and to choose her own relationships. 

"I'm through making decisions for you," he says, driving the theme home. 

She rightly doesn't trust this change of heart, and during the ensuing argument, she displays the same uncanny autistic insight skill as Sam: "You need me to be sick," she accuses. 

Of course this has been true in the past. But Benny has changed. When the doctor pressures Benny to put Joon in a group home ("Joon, we want what's best for you"), he gets his chance to prove his new course in the movie's final thematic pivot. He stops the doctor and says, "Why don't we ask Joon what she wants?"

Conclusion: Joon is a human being; stop treating her like a child.

The Feminist Angle

There are few women in this movie. Two men fight over the girl. These are good flaws to point out. 

But I'm also of this opinion: No movie can, or should, escape every problematic trope. When you're throwing new ideas at an audience, you've got to stay focused. If you veer too far from what the audience expects, your point gets lost. 

Here's a film that tackles the theme of disability in an impressive way. This argument would have been diluted with sisterhood themes, had Benny instead been Bernadette. 

Moreover, we got to see a rarely depicted male character: a nurturing and loving brother who sacrifices money, relationships, and free time, to take care of his sister. This important portrayal helps defeat patriarchal macho-male stereotypes.

Or imagine if Sam was instead Samantha. In 1993, no one would have gone to see the movie, and even today, the disability theme would be completely obliterated by a more controversial LGBT theme.

Tibbetts criticizes the film for giving Sam's talents more screen time than Joon's. But we actually spend far more time following Joon. She is the first person we see, and Sam isn't even introduced until 20 minutes in. We already like her, so we don't need to see dwell on her talents. (Plus, it's kind of boring to watch someone paint.)

Sam is the manic pixie dream boy, who exists solely to liberate Joon from her cloistered, sheltered life. We're not rooting for Sam to win Joon; we're rooting for Joon to win Sam. It's a reversal of the boy-meets-girl trope, so we're watching Sam through her gaze; we need to see what she likes about him. 

So manic. So pixie.
#Swoon

After all, she is the one doing the choosing. And that portrayal gets two thumbs up from this feminist.

Mental Health Services Are The Answer?

Ms. Tibbitts claims the movie doesn't show Joon getting treatment of any kind. I have to wonder if she fell asleep during the scenes with the aforementioned doctor. In one scene, Joon exits a personal session which I assumed was therapy. She is also on medication. 

There is no reason to assume this suddenly stops just because Joon moves out. We might also hope they are able to get social services. Those details are the sort of boring minutia reserved for Wikipedia, government websites, and clinic pamphlets. Not for the ending of a movie.

Ms. Tibbitts' attitude seems to imply that getting help is easy and safe. It is not necessarily either. Most disabled people are pressed for money, professional help is expensive, insurance doesn't cover most of our needs, and social services are severely lacking and difficult to navigate, especially for people on the autistic spectrum. 

Even when we can find a way to pay for it, and get through the paperwork, mental health services are desperately in shortage, in what USA Today calls a "man-made disaster".

From:
http://www.afaa-us.org/storage/documents/OAR_NYCA_survey_Current_State_of_Services_for_Adults_with_Autism.pdf

Worse, there are many dangerous programs and therapies that cause more harm than good. Controversy surrounds even some commonly accepted practices. 

A news story about abuses at the Judge Rotenberg Center
just last summer. Yes, including electroshock therapy. (Aug 2014)

Moving into a group home is not all happiness and daisies. As the doctor in the movie says, "These are very nice places," but they always say that. Institutions are often rife with all manner of abuses, ranging from neglect (and here), to electroshock therapy, to outright beatings and rape. It's nice to think those barbaric practices are a thing of the past, but we can't count on it.

Yes, therapy, meds, treatment are often beneficial. But it's dangerous to pretend these solutions are the answer for every autistic person. It bothers me to no end when allists carelessly toss them out as if it's all solved. It most certainly isn't.

For some autists, love is the only available answer. And many don't even have that.

Strong Disabled Female Character

Ms. Tibbetts' review concludes, "…the underlying message [is] that all Joon really needs is a stable romantic relationship rather than a stable relationship with herself, especially in relation to functioning in the outside world…" 

Thanks for your concern Ms. Feminist Lady, but I like myself fine.
Oh, and also?
#Swoon

Sorry, but Joon likes herself just fine, and neurotypicals be damned. She makes her choices and continues to assert herself against a powerful force that seeks to completely take away her freedom. Through meeting Sam, a fellow autist, she finalizes her already-begun self-actualization. She is liberated.

She isn't cured or changed. Instead, the world changes to allow her to live as she chooses.

This is what the neurodiversity and anti-ableism movement is fighting for. We wish to be accepted without having to force ourselves into the mold society expects of us. 

Yet it's by this mold that the reviewer judges Joon. She implies that Joon isn't in a stable relationship with herself unless it's in relation to the neurotypical world. Her relation to herself, only to herself, as a hetro woman in love with another disabled person, letting him provide for her so she can make art, doesn't seem matter. 

In the end, Joon and Sam don't let ableist messages control them. And neither will I. I won't let Disability Ventriloquists speak for me. No matter how well-intentioned they are.

Splines Theory: A Spoons Metaphor for Autism

An incident occurred last week where my child unexpectedly needed a ride to school in the middle of my writing session. And it ruined my whole day. Why?

I knew it had to do with Aspergers, but I wanted to know more. Puzzling over this question, I went in search for the perfect metaphor to describe the experience.

I love the spoons metaphor for invisible disabilities. It describes a portion of my world, and it goes something like this: Every morning, most typical people wake up with infinite spoons. They don't even think of spoons as a resource because they almost never run out. They can easily choose to do this or that without risking much other than time consumption. Sure, they get tired by the end of a full day, but generally they have enough spoons to do all the normal things. It's a gift they take for granted.

Those with chronic pain or serious illness or certain types of mental illness, like depression, only get twelve or twenty spoons a day. Each activity, even small things like getting dressed or making breakfast, takes a spoon. Careful choices must be made about how the spoons are spent; otherwise, they will be gone before the day is through. Or worse. A bad spoon-management choice might leave them without spoons for several days.

There is no spoon. It's just a theory.
Which states aren't enough spoons.
The word "spoon" is actually quite weird, when you think about it.
Why is it called a spoon?
Oh, that's why.
It's still weird.
I'm already out of spoons. I wonder why?
Oh look, a butterfly!

For the origin of Spoon Theory, and why spoons and not some other eating utinsil, see Christine Miserandino's account on her blog, But You Don't Look Sick.

I relate to this analogy somewhat, but it fails to describe the intricate resource-management I must do as an aspie. I wake up with a random number of spoons. Why? Why do I mysteriously get a bunch of new spoons at unpredictable times? The process of getting ready for a new task seems to cost me "spoons", but that model doesn't reflect the intricacies of the gathering process itself. What about the frustration I feel when I fail to gather or get interrupted? How do I describe the sense that a dozen little things need doing before I can start a big thing, each costing a fractional "spoon"?

Spoon Theory didn't fit the all data for my experience, so I went in search of a Grand Unified Theory of Resources or Law of Conservation of Aspergers Energy that I could use to think about and describe my universe.

I found a few articles on inertia that help describe some aspects of life with Aspergers, like:

• Autistic Inertia: An Overview
• Are Special Interests a Form Of Autistic Inertia?
• Let's Talk About Focus
• Stare Up At the Sky
• Coping with the Inertia of Task Paralysis

Inertia is a term I'd used years ago, long before my diagnosis. The idea is just like the law of motion. An object at rest tends to remain at rest, and an object in motion with a certain trajectory will tend to remain in motion, headed that direction, at that speed, until stopped or bumped off course by an outside force.

Inertia Theory perfectly describes my hyperfocus, or lack thereof, but it failed to describe outside forces I must apply to get up to speed. Or my frustration at outside-outside forces that stop me.

Last night, after doing a little light reading from Olga Bogdashina's book, "Communication Issues in Autism and Asperger Syndrome," eureka! I found it. The perfect metaphor, "Reticulating splines..."

I'm a huge gamer, and in the 90s I loved old school Maxis games. You know, SimCity, SimEarth, SimAnt. Back then, games took forever to load, especially on my old 386. While games loaded or maps generated, many companies showed useful information, like "Decompressing graphics files...", "Loading sounds..."

Maxis wanted to be funny, so their load screens repeated random nonsensical phrases that sounded Really Important™. Some of them flashed by so quickly you couldn't read them. One remained on the screen the longest, while a voice read it aloud: "Reticulating splines..."

Reticulating Splines...
Seems legit.

Maxis has carried on this fine tradition for decades, and while games now load lickity-split, they ensure you have just enough time to see "Reticulating splines..." flash past. For tradition's sake. Other software drops this phrase in as an Easter egg, and everyone who knows the joke gives a chuckle.

Separately, "Reticulating" and "Spline" are real words, but put together they make no sense. Until now.

What does this have to do with Asperger's?

The single greatest resource hog during my day is what some call "shifting gears", or moving from one task to another. Skilled teachers of autistic kids know to give a child ample warning of an upcoming task and to explain the purpose of moving on. Anyone who's worked with autistic kids knows the reason for taking this extra step. It's to avoid meltdowns.

Even the gear metaphor is problematic, because it takes no energy or time or frustration or boredom to shift a real gear. It's just BAM, you're in first and now you're in second. And you're still driving, not suddenly riding an elephant. It totally fails to describe the struggle of wrapping up one task and beginning a new one. For a neurotypical, it's as simple as shifting a gear. For someone on the spectrum, it's something else.

I knew from the get-go that my search for the perfect metaphor would center around this question: "Why does it take so long for me to get started?" The answer is wrapped up in other autistic tendencies: hyperfocus, special interests, distractibility, and "getting stuck".

Bogdashina describes how the autistic brain processes sensory information differently than neurotypical brains. NTs tend to take in sensory data all at once, summarizing, and comfortably filling in gaps with assumptions. As a result, NTs leave alot of things out, and in return for this compression, they get a speed boost.

According to Bogdashina, autists on the severe end of the spectrum cannot sense objects as part of a whole. A face breaks up into "mouth", "nose", "eye", "eye". A person then is "hand", "arm", "ear", "face", "hair". A room is instead a "wall", "wall", "table leg", "table top", "plate", "chair", "floor". Sounds and other senses take on the same fragmentation, and it's difficult for the autist to lump them all together into "mother" or "dining room".

My experience is not so extreme. I can see a person, a face, a room, a coffee shop, as a "whole thing", though sometimes details jump out at me like the eyes on a cartoon character, causing distraction (but it's also a superpower of observation).

Yet there is an aspect of sensory fragmentation I can relate to, and that's in memory storage and in my understandings of concepts.

Take a concept. For instance, one of my special interests, cults and mind control. I can can perceive the concept as a whole, but not without all its parts. Mind control is a network in my brain of all the thousands of things I've read about over the years, and my own experiences, and my views on how it appears in religion, politics, public schools, and the media. Everything I've ever linked to mind control is in there in this massive file, stored by words, principles, feelings, and synesthetic colors. The topic of "mind control" is not complete without all those bits.

Right now, I'm knee-deep in mind control, because that's the writing project I'm working on. If I were to switch to another project, say editing Emerald City Iron, which is a novel about fairies, I'd be knee-deep in fairies, with mind control long forgotten. I need room in my brain to unpack all the details about fairies and my characters and writing fiction. I'd no longer have room for the topic "mind control" and the task "non-fiction writing". The files would have to be stored away.

In order to really understand fairies and fiction editing again, I'd need to get back into that space, open up the whole file with all the parts. And doing that requires a resource which is nothing like a spoon or inertia. It's more like opening a big game on my old, slow 386. Hence:

Reticulating splines. . .<hourglass>

Screenshot of my brain reticulating splines.
Yes, this artist managed to capture it.
Credit: Jon Storm

It makes sense that a complex topic or project, like mind control or fairies, would take a long time to shift into. That would be difficult for anyone. But what is harder to describe is how the little things, things NTs take for granted, can be just as difficult to shift into.

Reticulate means to "make a net or network of". A spline is a number of things, including: "a. Any of a series of projections on a shaft that fit into slots on a corresponding shaft, enabling both to rotate together. b. The groove or slot for such a projection."

When I switch tasks, I am making a network of all the projections and grooves and slots and shafts and strips of metal and curve-drawing tools and geometrical maths used to draw up the task. I am loading and linking together all the details in my brain that are connected to the project at hand. And that's going to take time, whether that project is making a phone call, disciplining the dog, or writing a novel.

It doesn't just take time. It takes a bunch of energy and processing resources. It isn't fun at all. My brain has to work really, really hard. So when something interrupts me, and demands I dump the loaded program to load up a new program, I get very frustrated. When I've got lots of annoying little errands to do outside the scope of my main project, I lose splines and spoons. The more do this in a day, the more frustration builds.

For instance, if I need to make a phone call about a bill, I need to gather the phone number, collect all the data about the bill, and get into the frame of mind to make the call. For me, that requires gathering lots of little pieces, and on my hardware, it's slow loading. On NT hardware, it might flash by, "Reticulating splines!" so fast you can't even see it. Yet because I have more splines, they take longer to reticulate.

This is why, when I made and took twenty phonecalls a day as part of my tech support job, talking on the phone was relatively easy. It didn't take a lot of spoons, because it wasn't reticulating many splines. The "talk on the phone solving technical problems" program was all loaded up. It stayed in memory for years.

These days, using the phone requires all kinds of splines. And when I need to reticulate that many splines, it ends up costing spoons.

Likewise when I ran Sapioscape, an online retail business, I ran to the post office every day, shipping 3-5 boxes at a time. I was efficient, and it was even a pretty fun. Sometimes I still miss those days.

Now, when I need to ship just one box? I procrastinate forever and the task seems impossible. Because I have to reticulate every single spline related to packaging a shipping and item. It's a rather complex task for me, because my memory has stored each step as a separate thing that I have to recompile.

Same goes for home improvement tasks. I loved remodeling my house. I couldn't wait to get home and build bedrooms in the basement, retrofit foundations for earthquakes. and landscape the yard. Now? Hanging a picture seems impossible. Because I have to remember where I keep the nails and how to use a hammer.

Computers can run multiple programs in background, and so can I, which is fortunate. I can keep one or two complex tasks, and several small items partially loaded into memory. So at the end of the day, I can reticulate splines on some smaller tasks and recreational activities (which also require splines), and switch back to the big project again the next day.

It's not entirely free of cost. I can't just Alt-Tab. A few splines get lost and have to be regenerated again in the morning. If I do too many side-tasks or have too many interruptions or too much time passes, loading up the main project begins to cost more and more.

Part of my spline-management system involves ridding myself of potential interruptions before I can start on my real work for the day. So I invest alot of initial spoons and splines into dealing with small tasks. I try to make sure Prince Ryuk of Pomerania (the dog) is happy. I feed myself and make tea. I deal with email and twitter. I cycle through my ritual of lighting candles and taking meds and turning on music. I let kids and other events interrupt me during this time, and work as fast as I can to get through this routine so I can get to my real work. Sometimes even then my brain isn't into gear, and maybe by that time, I'm hungry again or out of tea. I stare at the blank page a few moments, and I'm back to checking twitter or fiddling with things on my desk.

Somedays, I can reticulate my splines within an hour, and I have an amazingly productive writing day. Other days, it takes many hours. With each passing moment, the frustration builds. I fear I won't be productive, that I'm wasting time, that my book will never be written. It's just like waiting for your favorite game to load on an old, slow 386. You're eager to get started, but those damn splines are still reticulating.

This is why my child needing a ride to school ruined my productivity for the day. It had taken me about three hours to prep for writing. (I was coming off a full week non-productivity due to other life tasks that needed attention, so I required additional spline reticulation.) The door slid open just fifteen minutes after I had finally gotten started putting words to page. I was the only one who could drive said child to school.

I thought I'd be able to get her there and home without issue. But no. I lost all the splines on the drive back. And I got angry. I had an anger-meltdown in the car. I screamed at the top of my lungs and smacked the steering wheel. I knew the day was wasted.

I wasn't angry at anyone in particular. Things happen. I was angry at the situation. And a little bit at myself for being this way.

I also knew that Spoon Theory wasn't going to be enough to describe what just happened.

I still have spoons. I have a limited number of social spoons, overstimulation spoons, working hard for too long spoons. There are some splines-to-spoon exchange rates -- reticulating splines can cost spoons, and if I don't get enough sleep, for example, I don't have enough spoons to reticulate many splines at all.

It's just that running out of spoons doesn't lead me to meltdown. Running out of splines can.

There is an upside to having a brain like mine. Once all those splines get reticulate, I have thousands of connected details available to me. That's not to say I have a photographic memory and can actually remember those details perfectly. But I know the parts that lead to the sum, and can look up things up from there. (Thank Google!) If one of the parts changes, I can make adjustments to the entire topic. If a new fact comes in that contradicts the old parts, I can take a look at the parts of the whole structure to quickly see where adjustments need to be made. I think of new ideas quickly because I kept all the bits stored away, not just the unalterable concept as a mushy whole.

It just means it takes a bit longer to load. Even the "easy" stuff like getting dressed or shopping for groceries or talking to humans. All these splines must be reticulated.

To summarize the three complex forces of Asperger's, I've come up with the Three Laws of Thermodynamic Autistic Motion, also known as "Spins, Spoons, and Splines".

1. Inertial Mechanics, or "The Law of Spins": An autist in motion will remain in motion until acted upon by an outside force, like a barking dog or the need to pee.
2. The Law of Conservation of Energy, or "Entropy of Spoons": Spoons can neither be created nor destroyed, only washed and placed back in the silverware drawer. It always takes more spoons to wash the spoons than there are total spoons, leading to entropy, and the eventual heat death of the universe and everyone in it.
3. The Law of Reticulation of Splines: The load time of splines is directly proportional to the number of splines in storage times the distance (in time) since the splines were last loaded times the number of interrupts by other spline-reticulating processes. As implied by the Second Law of Autism, spline reticulation requires energy in the form of spoons, splines, spins, and anger management classes. Moore's Law does not apply.

What do you think about this model? If you're autistic, or know someone who is, does it seem to fit?

Touch of Tides - Crossed Genres

I am exceptionally excited to announce that my story, Touch of Tides, was just published in Crossed Genres magazine. Please check it out, and while you're there, read the other two stories by DeAnna Knippling and Michael Ben Silva III.

In Touch of Tides, a xenobiologist explores the oceans of Europa. Mara has synesthesia, meaning her senses are crossed -- what she feels on her skin she also sees with her eyes. Her passion is studying Europan life, hands-on. Until she finds something dangerous.

Here are the opening paragraphs:

I swim with no light, artificial or natural. A solid ice shell, seven kilometers thick, floats above me in this single ocean that covers the entire moon of Europa. All I can hear is liquid gurgling in my ears and I taste residual salt that leaks in around my gill breather.

My name is Mara. I am naked except for my equipment belt and a molecule-thin coating of nanoscale to protect me from the chill. The other biologists at my barnacle wear full wetsuits when they dive, relying on augmented reality. My gill could report water conditions, geolocation data, and radar sight, if I let it distract me.

I prefer to let the touch-colors lead...

- See more at Crossed Genres.

Crossed Genres also gave me the spotlight interview, in which I answer questions about Touch of Tides, synesthesia, autism, and more.

I am particularly proud of this one, because it is my first hard science fiction story. I spent a lot of time researching, asking experts, sketching, and even doing math, to make sure the details of the story were realistic. Science is very central to the plot, and all of this could actually happen. (Meaning all my other stories are completely impossible, I guess.) It also marks my first pro-rate sale.

I wrote it for you. Please enjoy reading it.

Grapheme-Color Synesthesia Map

This week I've been doing a lot of thinking about synesthesia, thanks to a video, My Autism and Me. Some stray tweets led to interesting conversations on Twitter and email. Dr. Joe Spataro did a blog post, in which I sum up my synesthesia story in brief.

I have tons of thoughts on this topic, as well as tons of memories and my own story of realizing my rare skill at a young age, before I even knew the word "synesthesia", and before modern science had caught up to the idea of the grapheme-color type, where letters and numbers have color. Eventually, I may put some of those thoughts and stories in this blog.

For now, I've taken the time to map my colors for you. This is a mini-meme going around on DeviantArt and other circles on the internet. The template is made available by a Deviant Artist, Crowbar. Hat tip to my daughter Betsey for pointing me in this direction.

This is part of me. A very deep part of who I am and how my brain works. I love the wonderful colors I "see" every day in the words I read, in license plates, on signs, in phone numbers. I am an associator, which means I visualize the letters in color in my mind. The colors almost seem to pop out at me from the page - but stop just short of being real.

Inside? They are more real than real.

Welcome to my world.

I can't tell you how satisfying it is to look at the page and physically see how the letters should be. How they are meant to be. Not these black pretenders everywhere... I can see into your hearts, all of you, and these are your true colors.

I agonized to get these just right. Some of these letters I didn't get just right, and they're glaring at me. (Shut it, "B", you came early on before I'd figured out the software, and the tan shades are the hardest to find in the color tool!)

Note that none of my letters actually have a black border. I would prefer removing them, but that would require more graphics skills than I have. :) Lowercase letters are the same color as uppercase, though some are slightly different shades.

I shaded some of the letters to help show the motion they have. These are the letters that roam about, swirling or morphing through these particular shades. A few will change a lot. "I" is the hardest to pin down, since it can be a still solid white, gray, or bluish-grayish-morphy-whatever.

All of my letters will influence one another when they sit next to each other in words. That's when things get really interesting. Someday I may get creative and try to show you. I'd also love to show you my symbols like * and ~.

If you believe you may be a synesthete, please do a science. Take the surveys at SynesthesiaResearch.com, and the full battery at synesthete.org.