Wednesday, October 22, 2014

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?

10 comments:

  1. Amazing article yet again.I have shared this with all my colleagues at Autism Initiatives as they should all read it. You have such a wonderful talent LL. Davvo7 on WrongPlanet.

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  2. Thank you. An interesting and thought-provoking article. One of the bits that jumped out at me was "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 care a lot about other people, especially others on the spectrum (as you said: "my people"). I once wanted to be a social worker, but was a failure at it. Now I have found an outlet - working with high school students on the spectrum. I was hopeless at working with NTs as a social worker, but I can work as a mentor to students on the spectrum - we talk the same language! We think the same way, we like the same things - we get to discuss our shared special interests and show each other new things.

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    1. That's awesome! Yes, it's very much like we're just from different cultures, and feel more comfortable with people like us. Have you read any of Bogdashina's books? I'm just finishing Communications Issues with Autism and Aspergers, and it's amazing.

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  3. "Treat others the way they want to be treated" can be dangerous if what they want (which is often control and unearned deference) conflicts with what you're willing to give them. I know that wasn't your point, but it's where I get stuck when trying to apply the platinum rule.

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    1. True! It is coupled with the same level of restraint you'd use with the Golden Rule to keep people from walking all over you. :) You still have to exercise good judgement and protect yourself.

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  4. I read this with the greatest sympathy. It is how I at one time past thought. Your 'Platinum Rule' is flawed. Read Illusions by Richard Bach, the section with Shimoda & Don around the campfire, & the vampire that shows up. If everything else in the works of Richard Bach is wrong, it's still worth reading for that one scene (which starts as a critique of Don's insistence on 'the Golden Rule').

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    1. Hi Anonymous! I've read Illusions and I loved it but it's been a very long time so I don't remember that scene. I'll have to dig up my copy and check it out.

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  5. This article is brilliant. I am so pleased to find someone writing about the world exactly as I know it. Thank you!

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  6. Great sequence on Empathy... thank you Luna.

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