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.

Double-Standards: The Irony of Empathy and Autism

From I, Robopsychologist in Discover Magazine

I sat on the bed across from my partner, tears in my eyes as I prepared to share with him an insight I'd had at therapy that day. I felt incredibly vulnerable, ready to open up this secret part of me I'd kept defensively hidden, even from myself, for many years.

That afternoon, I had become aware that my aloof exterior obfuscated a deep well of emotion and caring. I had blocked myself off from what would otherwise consume me. I'd learned as a child that if I thought about anyone's pain, I'd fall into the vortex. I'd lose myself in a trippy, altered state of consciousness, and not in a good way. 

For example, I once accidentally saw a short video about the maltreatment of animals in the Chinese fur trade, and I couldn't get the horrible feeling or the images out of my head for months. The experience came unbidden, and I couldn't stop imagining what it was like to be those animals. When this inadvertent exposure happens, my only defense is to keep trying to forget, to try to switch off all feeling, to stop caring about anyone. Even as I write these words, I'm fighting off the flood. The result is a hardened exterior, an unfeeling facade, a sort of clinical detachment that I apply to any expression of pain. 

So when I had this insight, I was eager to share it with my partner, who always thought I'd been too distant, too cold. Who had encouraged me to try to open up more, to feel more empathy for others. 

I opened my mouth to speak…

But first, he wanted to share his own insight he'd had that same day. With all the sincerity and loving care he could muster, with the best intentions, he said the most hurtful possible thing he could have:

"I've come to accept that you're just an uncaring person. Feelings for others just don't come naturally to you. I acknowledge that about you. I love you anyway."

I tried to explain. I tried to argue. But he interrupted, insisting. He simply would not hear me out. I'm sure he was trying to soothe my feelings, to argue against what he thought was my own defensiveness and lack of self-acceptance.

But in so doing, he couldn't really hear me. He loved and accepted someone else in that moment. Not me. Who I really was, was being ignored, erased, written over with yet another misunderstood Luna.

All my life I've been misunderstood, even by those closest to me. It's something I've gotten used to, and something I didn't understand until my Asperger's diagnosis last year. 

I can't get over the irony or the pain of that moment. Nor can I get over the irony and pain I feel when I see this scene enacted over and over in my own life and in the lives of other autists.

And so a post on empathy. And on being misunderstood. Because it's really all about the same thing.

The Mechanics of Empathy

Autists supposedly don't feel empathy, or perhaps much of anything, and this assumption comes with moral implications. We see it in popular portrays of autism in entertainment. In the news, anytime there's a school shooting, the mental health speculations begin. "Oh, maybe he had Asperger's. They don't feel any empathy, so maybe that's why he did it!" To this day, "lack of empathy" is phrased in different ways on diagnostic lists, an echo from ancient diagnostic criteria for Asperger's, which have long since been clarified and rewritten as "deficits in social or emotional reciprocity," which is more accurate, but still lacking in some ways. 

This (and several other faulty criteria) is one reason why I went undiagnosed for so many years.

It's a dangerous belief that persists in spite of the truth. It dehumanizes autstists, and ironically, gives allists (non-autistics) a get-out-of-empathy-free card. It contributes to greater misunderstandings, bullying, and maltreatment from a supposedly moral and caring society.

In order to understand autistic empathy, we have to understand empathy in general. It's something scientists spend plenty of time studying, so this is something we can know.

First of all, empathy requires the ability to perceive what someone else is feeling. This isn't a psychic phenomenon. It's a type of emotional communication that requires a sender and a receiver who are both conversant in the same languages. It involves the ability to physically perceive body language, to interpret tone of voice, context and subtext, as well as literal meaning of words. 

If the receiver gets the emotional message, then she may feel empathy for the pain the sender feels. Then the empathy must be communicated. She must know how to react in a way that the sender can understand.

So three parts: 

• Understand something is wrong
• Feel empathy
• Communicate that feeling back

For a person with autism, there are many things that can go wrong in this chain of events. Being able to "feel empathy" is only one of the many things that can break down.

Autism Factors in Expression of Empathy

“Dora Maar” 1936 by: Pablo Picasso

We already know that autists often have difficulty understanding facial expressions, tone, and body language. So right there, that's an issue. Very often, an autist may not even understand that the other person is in pain.

Alexithymia is an issue for many (but not all) autists — that's an impairment in the ability to know what you are feeling. You still feel it, but can't translate it into meaning.

There are other emotional factors as well, such as chronic depression and anxiety.

We also know that autists, even verbal "high functioning" autists have a hard time expressing themselves. This is compounded under stress, which can increase in the kinds of situations where empathy is required. The stress goes up even higher if, based on past experience, the autist is afraid of screwing up.

Sensory issues compound all these already-complicated factors. Arguably, all autsits have issues processing sensory information. Sound, touch, light, emotion, spatial awareness, and more, are all subject to confusion.

As Olga Bogdashina describes in her book, "Communication Issues in Autism and Asperger Syndrome," autists can be hyper- or hyposensors. We can over-sense, and we can under-sense, depending on the person, the sensation, the situation, and dozens of other elements. It leads to problems like I have with hearing. I can hear tiny sound across the house that keep me awake at night, but have to cup my hands around my ears to listen to a friend in a restaurant.

So imagine if I'm stressed out trying hard to process a conversation over the noise of cafe chatter, which is taking most of my concentration and causing me some anxiety. On top of that, I've got to interpret your tone and body language. This alone can pretty much max me out. If I have any processing power left to feel empathy, will I have the wherewithal to react empathetically? 

Sometimes yes. Sometimes no.

Sensory processing can cause problems with understanding facial expressions, too. Autists often avoid making eye contact because the sensory cost of doing so is far too intense. These autists are missing information for determining the moods of others. One aspie I know describes the feeling of eye contact as if someone were touching him all over. He can't concentrate and he feels violated. 

Bogdashina describes a sensory processing phenomenon where parts of a face detach and can't be seen as a whole face. The nose becomes a separate object from the mouth, and the eyes seem unconnected to one another. This would make interpreting body language impossible. 

Emotions themselves are sensations. Some have speculated that alexithymia and other hyposensory issues might be the result of sensory overwhelm, as Kamil and Henry Markham point out in their Intense World Theory.  As a defense against an onslaught of loud music and emotions ramped up to 11, autists might simply shut out the world. The fuse blows, the circuits are tripped, the system powers off. This seems to happen particularly in a temporary condition some autists get called a "shutdown." Like a meltdown, it happens in response to overstimulation, but instead of creating an uncontrollable emotional reaction, it results in the senses completely turning off — no more feelings, and sometimes no more sound, sights, or ability to speak or move.

If feelings can become overwhelming, then empathy, as a feeling, can too. This suggests that many autists have the opposite problem from the one we're infamous for. We may be feeling too much empathy, so, like a hand shading our eyes from a bright sunset, we block it out. "Seventh Voice" describes this phenomenon in more detail.

Assuming we manage to get all that processed and don't clamp down from the overwhelm, we've got to communicate the empathy we feel to people who might not interpret it the way we intend. Here's a heartwarming piece about a mother who was able to read her daughter's nonverbal form of helping, because she was paying attention and learning her daughter's autistic language. 

Fight or Flight or Freeze or Appease

Gazelle got no time for empathy.
via discoverwildlife.com

We also know that autists are more prone to suffer PTSD. This is likely due to the sensory processing issues, and the fact that for some of us, physical and emotional pain hurts us more than it hurts a neurotypical. We are more likely to generalize PTSD triggers as well, and we are definitely more likely to be bullied. This is all in need of further study, but it's clear that most autists will be dealing with these factors.

Any human being, when triggered by PTSD, is put into an extreme fear state. The higher functions of the brain shut down, and the body and mind go into complete focus on self-preservation. There is no logic in this state, there is no reasoning, and for some autists, there aren't even words because even verbal autists may become non-verbal when triggered.

If an autist is triggered by trauma, or in a constant state of sensory overwhelm to the point of pain, there will be no mental resources left to think about the pain of another person. Survival instincts come first. It's just the way the human mind works.

The "Experience" Angle of Empathy

Experience plays a huge role in how all human beings experience empathy. Professor of Psychology and Neuroscience, Warren H. Meck, says, "To be empathic towards others you have to have something in common with them."

You can only feel empathy when you know what it's like to be in the other person's shoes. Empathy is tied to the ability to realize how much you are like another person and to have some level of experiential understanding of what they are going through. We literally can only be empathetic to people we relate to. 

fMRI studies show what's called the perception-action model of empathy, that when we truly know what something feels like, it activates a different region of the brain than when we are struggling to imagine. One is felt, the other is thought.

This creates massive cultural divides. As writer Tim Wise puts it, "Empathy — real empathy, not the situational and utterly phony kind that most any of us can muster when social convention calls for it — requires that one be able to place oneself in the shoes of another, and to consider the world as they must consider it. It requires that we be able to suspend our own culturally-ingrained disbelief long enough to explore the possibility that perhaps the world doesn't work as we would have it, but rather as others have long insisted it did."

Researchers study what they call ethnocultural empathy. According to Wikipedia, "…increasing research found that people usually hold different levels of empathy toward different individuals based on perceived psychological similarity." 

It makes sense that it is easier for us to empathize with people from our own culture, because we have walked similar paths. It is much more difficult to understand people with whom we have no common experiential dialect. At least, until we are exposed to the narratives from that culture — stories, movies, personal interactions, that put us, temporarily, in their shoes through a process called "experience taking." Simply reading fictional stories about people from other walks of life is enough to boost empathy. 

Dehumanization is the wicked, jagged edge of this double-edged sword. It is the act of "othering," of tearing down the ability to feel empathy for an individual or a group of people by focusing on how different they are, so they can be mistreated without a single shred of guilt.

This is all related to "dominant culture arrogance," coined by Nicole Nicholson in her blog, Woman With Aspergers, to describe the idea that the right way to do things is morally right because the dominant culture says so. 

Is Autism a Different Culture?

I think so. We are raised in the same culture as allists, but our fundamental wiring is significantly different. We process senses and memories differently, we learn language differently, and we experience the world differently. So while we're all using the same words and growing up with the same social norms, we're viewing them through a different lens.

Many autists describe themselves as feeling like aliens, forced to live on this inhospitable planet with "normal" humans who will never understand them. It's where the name for the popular autism site, WrongPlanet.net, comes from. The communication difficulties between allist and autist cultures are very similar to those experienced by people from differing countries.

It seems pretty obvious to me the effect this would have on mutual empathy, yet for some reason, it's not obvious to those in the "dominant culture" who are in a position to judge our supposed "lack of empathy." They view it a symptom inherent to the "disease" of autism. 

Autists simply don't know what it's like to be an allist. We think differently, speak different languages (using the same words), and we care about different things. I pretended to be an allist all my life, and I've passed most of the time, and yet I still don't know what it's like to walk in an allist's shoes. This may be why I struggle to empathize with people who stress about sports teams, fall fashions, or dinner etiquette. I can sympathize, I can try to imagine, I can try to remember what it's like to be stressed about something I care about, but I will never know what it's like to care about a losing sports team.

Just like allists don't easily understand why I need to stim, why it's important that certain of my routines never be interrupted, why I meltdown, or why I care so goddamn much about spiders. And most allists will never understand what it's like to be regularly misunderstood by virtually everyone.

These cultural differences don't prevent me, however, from deeply empathizing with someone in physical pain, someone who has lost a loved one, someone who is suffering from poor health. I've experienced these problems, or something close enough, to understand why it's important. Yet the lack of one type of empathy (say, sadness over ruined wedding plans) does not equate to a lack of all empathy.

Allists have just as much of a struggle to empathize with autists for exactly the same reasons. Our needs and feelings are incomprehensible to those outside our "culture." But for some reason, the responsibility to learn empathy lies on us, even thought it arguably is more challenging for us because of all the sensory processing, PTSD, anxiety, and verbal issues. 

If allists are so socially capable, then why don't they put in the extra effort to learn our language, to feel our pain?

Dehumanization of Autists

The way autism is handled by just about everyone (researchers, medical and mental health professionals, teachers, families, the media) is very divisive and problematic, and, ironically, leads to a destruction of empathy.

Dehumanization destroys empathy by creating divisions and making groups of people seem more different than they actually are. The shoes we might otherwise be walking in are torn off our feet.

The military dehumanizes the enemy when they train soldiers to shoot on command. It's what religions do when they demonize anyone outside their faith, and why members of some religions can literally blow themselves up in efforts to destroy innocent civilians — because they're not really people.

When news media speculates on how the latest shooter had Asperger's, it removes society's ability to understand people with autism. And when this comes alongside moral judgement, it also removes society's responsibility to be empathetic. The obligation of reciprocity is removed. Allists don't have to feel personally responsible for the plight of fellow humans who are suffering in their midst.

I am frustrated when I see this happening in research methodology and the conclusions they reach. For instance, one line of thinking has concluded that there are two classes of empathy, cognitive and emotional empathy. "Normal" people of course have both kinds of empathy, and autists only have emotional empathy, which is sort of like a lesser version of empathy, not "real" empathy. As M Kelter points out, this turns autistic empathy into some kind of fake empathy, as if we're not really human, or some other class of human.

Allist researchers don't stop to think that maybe we're people, and that maybe we act the way we do for good reasons, and that maybe they could just ask us about our "mysterious" behavior before developing studies to delve deeper. Yes, quantitative studies are needed to weed out biases and poor data, but when these studies are based on faulty assumptions in the first place, the output will be faulty.

It's clear from a majority of studies that researchers never did the initial legwork of treating us like human beings who have mouths and can communicate. Much of the Theory of Mind research is a good example of this, as are most of the autism diagnostic and trait lists, especially prior to the last decade or so. This approach seems to treat autism in terms of how it is a problem for caregivers, and does not, instead, consider how autism affects us, the actual autistics.

Imagine if we treated heart disease this way; if the list of symptoms for a heart attack were framed in terms of how the patient were a burden on those around him:

• Patient clutches chest even though nothing is there
• Patient gasps even though there is plenty of air in the room
• Patient makes loud nonsensical non-communicative noises, disturbing those around him
• Patient falls down without a care for the needs of others present
• Patient leaves his dead body on the floor as a tripping hazard, with no consideration for public safety

Would it be any surprise then, if after decades of research, no one could figure out the root cause of heart attacks? Would it be a surprise if standard treatments of, "Yell at the patient until he understands how to be kind to others," and "Force patient to remain standing and to breathe normally," don't really work?

Such treatments would be considered highly inhumane and unempathetic. 

Quite frankly, I find much of the common wisdom and current understanding and treatments for autism to be highly unempathetic, precisely because this is the still approach taken.

The Pain of Being Misunderstood

I spent most of my life not knowing about autism or that I was on the spectrum. Once I started learning, the floodgates opened. My own empathy for other autists flows easily and very deeply. 

I am an exceptionally verbal person who can socially pass as neurotypical, and I am mostly functional. Yet I relate strongly even with non-verbal autists, who don't seem to share much in common with me. What do we have in common?

Autists seem so very, very different from one another. They say that once you've met one person with Asperger's, you've only met one person with Asperger's. Externally, autists seem incredibly diverse, struggling with very different kinds of problems.

Yet when I watch movies and read about non-verbal autists, I feel like I know them. These are my people. I instinctively understand all their unusual behaviors, even behaviors I don't do myself. 

The first time I watched this video about Carly Flieshman, before I suspected I was autistic, I cried. Her story broke through my hardened, defensive exterior like a wrecking ball. I felt somehow as if I had walked in her shoes, as if I had lived her experience, even though her life is nothing like mine. Her traits are nothing like mine. But somehow I had some inkling of what it was like to be her.

I also strongly empathized with all the autists represented in the documentary Jabbers and Wretches. While watching this film, I realized the one single thing that all autistic people have in common: 

We are all misunderstood.

And we are misunderstood for all the same reasons. No matter how verbal we are, we have struggled our whole lives to communicate. Not just because we have various levels of ability to speak the allist language, but also because our very state of existence is misunderstood. Few allists will relate to a persistent struggle with itchy clothing, lights too bright, sounds too loud, input too confusing, emotions amped up too high, when everyone else around us is just fine with the brightness, the sounds, the social inputs, and the emotions.

Our behaviors are misattributed. Our good intentions are misread. We always seem to be missing the mark, not measuring up, and not fitting in.

No matter where you fall on the spectrum, you know how frustrating it is to get the world to simply understand. I can speak just fine, but I can easily imagine the horror of not being able to. And the nightmare of people assuming stupidity because of it. How heart-wrenching! Their misfortune could have easily been mine. And sometimes it is, in spite of my skill with words.

Autists Struggle with Empathy? Or Humans Struggle with Empathy?

What puzzles me is why we autists are the ones with empathy problems. But allists have the privilege of being the "normal" ones who get to make the judgment call. In our case, lack of empathy is a pathology. In their case it's a perfectly understandable reaction because it's ok to treat freaks without compassion. 

Yet we were the ones kept in cruel and unsanitary institutions for centuries, and who are currently undergoing questionable treatments that ignore our pain and deny our humanity. 

So who really lacks empathy? Why must the burden of learning empathy for the "other culture" fall on autists? Shouldn't the heavy lifting fall to those who are supposedly better at it?

Allists demand empathy. We just want some empathy in return. Yes, allist caregivers are frustrated with the one autistc in their life who cannot reciprocate… well imagine if no one around you could empathize with you? How lonely would that be? 

That's the experience of a person with autism. That's what it's like to be in these shoes.

The Golden Rule Sucks and Here's Why

I'd suggest that many of these problems boil down to a saying we all learned in kindergarten. It is a phrase designed to teach children empathy, but, in fact, it impairs empathy: 

"Do unto others as you would have them do unto you." 

This one statement has some pretty serious flaws. It presumes everyone is the same. It presumes everyone wants the same things. And if you don't want the same thing, then you're abnormal. You're malfunctioning in some way that must be set right.

The Golden Rule causes us to make assumptions about what other people want based on our own needs. So when we give someone these things, and they reject it, we personally feel rejected. The defensive reaction is to blame them. After all, you were doing the morally right thing that you learned in kindergarten. You're a good person, so they must be the bad one.

Shark's just following the Golden Rule!

There is no room in this phrase for constructive feedback or the collecting information to correct the method of giving. We don't learn to ask people questions about their different experiences and what they need. There is no room for active "experience taking" that leads to greater understanding and empathy.

The Golden Rule instills in all human beings the assumption that we ought to just know what others are feeling. But sometimes, no matter how socially capable we are, we have to ask. This goes for neurotypicals as well. Assuming that others need what we need, though well-intentioned, is literally self-centered. Not other-centered. We are interpreting others as if they are us.

Remember the full cycle of reciprocating empathy? Know what someone is feeling, feel it, and react appropriately. The golden-rule assumption causes these steps to break down.

The Golden Rule may be partly at the root of reinforcing the ignorance that surrounds all types of privilege. The subconscious logic goes like this:

"I'm normal, and I want X. Now you're telling me you want Y. That makes no sense, because everyone already has Y. They all have Y because I have Y! And I'm a nice person — I learned to be a nice person in kindergarden — and you're telling me I'm not a nice person because I won't give you Y, but you have Y! Everyone has Y! You must really want X, the way I want X. So I'll give you X. 

"But now you say you don't want X. The only reason you would be acting that way is if you're irrational. You're crazy. You're stupid. You have a chip on your shoulder. You're angry for no reason. You have a disorder and need to be cured." 

If you're a person who wants something different from "normal," you must be inferior. And we come back around to othering and dehumanization.

In the case of autism, maybe X is the neurotypical need to be touched. Y is not wanting to be touched because of sensory overwhelm. 

Or Y can be extra time to take tests, or the ability to avoid eye contact without overt pressure, or the ability to stim freely without being mocked or punished, or the need to take extra breaks, or sometimes just the chance to be taken seriously, a very important privilege many neurotypicals take for granted. 

The Platinum Rule Leads to Greater Empathy for Everyone

A small change to The Golden Rule would fix everything. I invented this on my own, and called it the Platinum Rule, only to discover that someone else had beat me to it:

"Do unto others as they would have you do," or "Treat others as they want to be treated."

There are no faulty assumptions in this rule. It destroys the presumption that we're all the same. In order to follow it, you must really listen to others. The act of listening itself can be very healing and trust-building. It is a skill that can be difficult for any type of mind to learn, allist or autist. The art of active listening and validation are key ingredients to skillful empathy that rarely comes naturally to anyone.

If we're taught to treat everyone the way they want to be treated, our first question would be, "How do you want to be treated?" And in that, we constantly practice experience taking, and therefore, gain greater capacity for empathy.

In an alternate world, where this is taught in kindergarten, you would have to try to understand others to be a good person. 

And isn't that what we all want? To be understood?