Tag Archives: social scripts

The Empathy Conundrum

Let’s get the hard part out there first: I lack empathy.

By lack, I don’t mean a complete absence of empathy; I have an empathy deficiency.  If most adults are “doing empathy” at the calculus level, I’m still in Algebra II and solving for X in ways that would make your head spin.

Before I discovered the online autism community, I assumed that my impaired empathy was typical for someone with Asperger’s. Much of the published literature includes impaired empathy as a common AS trait. “Lack of social or emotional reciprocity” is one of the diagnostic criteria. My own experience didn’t disprove that.

Then I discovered the online ASD community and suddenly felt like I needed to hide my struggles with empathy. Everywhere I looked people were refuting the notion that autistics lack empathy.

Again and again I’ve encountered discussions about empathy online and quietly slunk away, feeling like there was something wrong with me–like I was a “defective” autistic.

I Googled empathy–probably one too many times. I read the long list of definitions at Wikipedia . I read Simon Baron-Cohen’s writing on the subject and felt the same anger others have expressed at his biases. I read looooong threads on Wrong Planet and Facebook. I revisited the diagnostic criteria. I combed through the #actuallyautistic tag on Tumblr.

The more I read, the more confused I became. I started to wonder if I was talking about the same thing others were talking about when I use the word empathy.

So let’s talk about that. What is empathy, exactly? What are we talking about when we talk about empathy?

Sympathy vs. Empathy

Empathy, in the most basic sense, is the ability to understand and share an emotional state with another person.

As an adult with a good amount of life experience, I can often understand the emotional state of another person. I know that if someone’s dog has died, they’ll feel sad. Most people probably come to this conclusion in a more instinctive way than I do, but I get there all the same.

Depending on the situation, I may share an emotional state with another person to some degree. I know how I felt when my dog died. Logically I know that the other person feels very sad. If I knew the person’s dog, I’ll feel a sense of loss myself, and that will contribute to my sharing their emotional state. However, I rarely experience a strong emotional reaction to another person’s circumstances.

That’s not to say that I don’t experience concern toward other people. Simple concern for others, though, isn’t so much empathy as sympathy. Sympathy is a concern for the wellbeing of another person. It can exist in the absence of the empathic act of sharing an emotional state with that person. It often arises from empathy, but it doesn’t have to.

When my daughter says she’s had a bad day at work, even though I find it hard to share her emotional state, I sympathize with her frustration or sadness. I don’t know what it feels like to get a phone call from a suddenly homeless student. I can’t truly share what my daughter is feeling as she tells me about the experience. But I do worry about her ability to cope with the situation. I understand how important her work with is to her. I hear the distress in her voice and want to do what I can to offer comfort.

In this type of situation, I have a great deal of sympathy, regardless of how strongly rooted in empathy my concern is. My sympathy doesn’t always come across like a neurotypical person’s sympathy would–okay, it rarely does–but it exists just the same.

The Challenges of Perspective Taking

The examples I used above are fairly explicit in terms of the emotional content of the situation. Both a dead dog or a student who’s been kicked out of her home have obvious contextual clues to the emotions that are present. Even my rudimentary empathic radar is going to pick them up.

Where I struggle most is in subtle situations. I often say things that other people consider insensitive and then I completely miss their wounded reaction to my comment. Why? Because I didn’t know that my comment was insensitive in the first place and I have trouble reading nonverbal communication.

Think about it. If you didn’t know someone’s dog had died, would you find it easy to understand and share their emotional state? Probably not. You’d pick up that something was wrong, but you wouldn’t be able to truly comprehend how they felt until they explained the source of their distress.

For me, all the little things that people communicate nonverbally or hint at or imply are like a whole bunch of secretly dead dogs. Until some says, “your comment hurt my feelings because ________” all I have is a vague feeling that something is off. Maybe not even that.

This is why I “failed” the Sally-Anne test. Twice. I failed it when I first discovered it early in my reading about Asperger’s and then I failed it again a few weeks ago, because it was presented in a slightly different format. Yep, twice.

You can argue that the Sally-Anne test has little to do with empathy. It’s true, the Sally-Anne test doesn’t predict the emotional dimension of empathy. Taking the test doesn’t require you to share an emotional state with Sally. It does, however, require you to set aside your own knowledge of the situation and take Sally’s perspective.

This is where a more precise definition of empathy comes in handy. Empathy actually has two components: cognitive (perspective taking) and affective (emotional response to another’s emotional state). The Sally-Anne test is a test of cognitive empathy, which is impaired in people with Asperger’s. However, when it comes to affective empathy, according to a 2007 study* aspies are on par with neurotypicals.

So. Affective empathy? We have it. Cognitive empathy? Not so much.

This is why I can fail a simple test twice, even when I already know the “answer.” I automatically default to my own perspective. I can take another person’s perspective, but it often requires a conscious decision on my part to do so. This seems to be something that’s silently implied in the general, vague, oft-used notion of empathy: that one can spontaneously and instinctively understand and share an emotional state with another.

When I say I have an empathy deficiency, I mean that I struggle with taking the view of another person spontaneously and instinctively. I lack cognitive empathy.

Too Much Empathy?

Over and over again I see references to autistic people having too much empathy. While I think the people using this phrase mean well, I’m not sure it’s accurate. Is an autistic person who feels overwhelmed by an emotional situation truly sharing and understanding the emotional state of another person too much or are they overwhelmed by an inability to regulate their own reaction to a highly-charged situation?

Generally, when I feel emotionally overwhelmed by another person’s emotions, it’s related to my alexithymia (emotional dysfunction). In short, I have trouble regulating my own emotions and I have trouble discriminating between emotions that are “aimed at” me and emotions that are “aimed at” someone else. If I encounter two people having a shouting argument, my emotional reaction is the same as if I were the target of their shouting, as if they were both angry at me.

I don’t think this is empathy. I’m not sharing their emotional state (anger) so much as feeling like the target of it. If I were sharing the emotional state of the people in the shouting match, wouldn’t I feel like shouting at someone, too? Instead, I feel frightened and intimidated. I feel an intense need to escape from a situation to which I’m nothing more than a bystander.

In fact, in this kind of situation, the only person I’m thinking about is myself and how uncomfortable I am. There I go again, taking my own perspective. My distress at the situation might outwardly appear to be empathic but my internal reaction is a great big “MAKE IT STOP, NOW.”

This type of reaction is mentioned in the 2007 study I referenced earlier. The researchers found that the aspies scored significantly higher on a scale of personal distress than the neurotypical group, indicating “a greater tendency to have self-oriented feelings of anxiety and discomfort in response to tense interpersonal settings.” Note the use of self-oriented feelings in that sentence. Empathy by definition describes a state shared with others; an overabundance of self-directed anxiety or discomfort is not the same as “too much empathy.”

The Right Way to be Autistic

Circling back to what got me started on this post: the subtle implication in the discussion about empathy that there is a right way to be autistic and that right way includes having empathy or too much empathy. And perhaps as a corollary to that: autistics who have too much empathy are doing their part to subvert the stereotype of the unfeeling autistic.

That was probably an unpopular paragraph. If you found it offensive or upsetting, take a moment to stop and think about why.

Is there any difference between the subtle pressure to (appear to) have empathy and the subtle (or not so subtle) pressure to not stim in public or to make eye contact? Is advancing the belief that all autistics have empathy another way of making us seem more normal? Is there a difference between pressure to not look different outwardly and the same sort of pressure to not feel different inwardly?

Empathy is often philosophically framed as a fundamental element of the human condition. Without it, are we somehow less than human? What if we have impaired empathy–is our humanity impaired?

Choose Your Words

Perhaps we need to be more thoughtful about how we use the word empathy.

Empathy is not interchangeable with sympathy.

Empathy is not interchangeable with emotion.

Empathy is not interchangeable with emotional overload.

Empathy is not some hoop to be jumped through to prove to the world that we may be autistic, but it’s not that bad because “oh look, we have empathy just like you!” (Even if we do, in whatever form. There should be no burden of proof.)

Empathy has many definitions, but they all have at their core understanding the emotional state of another person.

When I say I lack empathy, what I mean is I have a deficit in understanding the emotional states of others. Hell, I have a deficit in understanding my own emotional state at times.

"I lack empathy" simply means that "I have a deficit in understanding the emotional states of others."
“I lack empathy” simply means that “I have a deficit in understanding the emotional states of others.”

This doesn’t mean I’m unsympathetic.

It doesn’t mean I don’t care for others.

It doesn’t mean I can’t show concern.

It doesn’t mean I have no emotions.

It doesn’t mean I don’t get overwhelmed by other people’s emotional states.

It doesn’t mean I’m any less human than you are.

What does it mean then?

That I may need more information than a typical person to understand a social situation. That my reactions to your emotions may be unconventional. That I have to work harder to grasp what comes naturally to most people.

Simple as that. Nothing more, nothing less.

——-

*Thank you to Pi for pointing me toward this study. It turned out to be the missing link in wrapping this post up.

For a mom’s point of view on this, check out Does My Child Lack Empathy? by Jeanie at Reinventing Mommy

Rules to Live By

When you have Asperger’s Syndrome, sometimes life feels one long “if . . . then” statement. If someone is crying, then they’re sad. If someone is sad, then they want a hug. If I give them a hug, then they might feel better.

From childhood I’ve been building up a database of if . . . then rules, hardcoding them into my brain through repetition. This is one of my core coping strategies for dealing with my Asperger’s on a daily basis. Without my if . . .then database, left to my own devices, I’d come across as much more autistic than I do.

If . . . then allows me to pass in an NT world. If . . . then gets me through most days without randomly offending people.

If . . . then, if . . . then, if . . . then.

In high school, I took a computer class that consisted mainly of learning BASIC, the programming language that ran the TRS-80 computers that populated the new and mysterious computer lab. I immediately fell in love with the clean simplicity of computer code. Everything was accounted for. Everything was explicitly declared in the code. If it wasn’t, the computer balked. Computers don’t infer.

My first computer was a  Tandy-Radio Shack TRS-80 like this one. See that cassette player? That was the “hard drive.” Old school geekery.

How simple life would be if we had to declare everything up front. If every task and interaction had a neatly nested set of if . . .then statements to be stepped through.

I spent hours programming simple text games. If ‘yes’ then ‘turn right’ else ‘turn left.’ It was fantastically binary. The elegant addition of ‘else’ allows for choice, but only one. Turn right or turn left. Open the door or leave it closed. Each choice branching off in two directions, creating a tree of neatly predefined decisions.

If you’re thinking a few steps ahead, you’ve probably anticipated the roadblock my fourteen-year-old self ran up against. Working further and further down the tree, choices multiplying exponentially with each new level, eventually I would be overwhelmed by the possibilities and abandon the game I’d been so excited about an hour before.

If . . . then, if . . . then, if . . . then.

There should have been a lesson there, but I began again and again, erasing the tape that held the code and starting with a fresh scenario. You wake up to find yourself locked in a padded room . . .

The computer was apathetic. Each time I started over, it displayed the same blinking gray cursor. It lacked judgment or even any real memory capacity other than the one I allowed it to have.

There was a predictability in coding that was comforting. The choices were finite. As long as I thought things through, there were no surprises.

I tried imposing this kind of order on the rest of my life, but people seemed reluctant to be programmed. They liked unpredictability. They didn’t need to know how every minute of  the day would unfold to enjoy it.

They had their own sets of rules. They seemed reluctant to share them.

If . . . then, if . . . then, if . . . then.

I’ve always been more of an observer than a participant. I watch. I collect data. Patterns emerge. A rule forms. I catalog it. Apply it. Adjust, adapt, reformulate.

Watching is safe. Quiet is safe. This is one of the first rules I learned and it stuck in the way that few have since. If I’m quiet, then I’m not getting yelled at. If I don’t say anything, then there will be nothing for anyone to make fun of. If I watch carefully enough, I can figure out what the rule is here without having to ask and look stupid.

The rules kept me safe. They created a positive feedback loop, naturally rewarding me for following them and punishing me for deviating from them.

But over time, the rules boxed me in. There were rules for school, rules for work. Rules for marriage. Rules for motherhood. Slowly, unconsciously, my life narrowed, and narrowed further still. Like my game collapsing under the weight of exponentially growing options, the rules became more of a burden than a support.

I forgot about the elegant ‘else.’ Choice receded, rigidity crept in.

Breaking the rules was unthinkable. If . . . then. Stay within established parameters. If you can’t find a rule for it, avoid it. Breaking the rules causes dire consequences. So dire that they’re unknown.

If . . . then, if . . . then, if . . . then . . . else.

Understanding Asperger’s Syndrome has helped me rediscover the beauty of else. I have choices. The rules are malleable. I made them; I can unmake them.

The rules are supposed to serve me, not the other way around.

Editing the rules is hard, but I’m trying.

Many stay. They’re useful. Necessary. They’re how I pass. Offer someone a beverage when they visit your house. Leave an empty seat between you and another person on the train. Kiss your husband goodbye when he leaves home in the morning.

Some stay in spite of their apparent uselessness. They’re harmless. They give order to life. Always swim an even number of laps. The bowls face to the left in the dishwasher. Dry your hair first after showering. The blue towel is mine.

The bad rules get deleted, though not without a struggle. The house has to be spotless if guests are visiting. Items on the ‘to do’ list must be finished by the end of the day no matter what. Iced coffee has to come from Dunkin’ Donuts.

People gift me with the rules that I fail to intuit. When you say goodbye, look at the person you’re talking to, not the direction you’re about to walk away in. If you have something important to say, wait until you’re face-to-face to start the conversation.

New rules emerge, from conscious thought not patterns. Think before you automatically say no to a spontaneous change of plans. There is more than one right way to do something.

If . . . then, if . . . then, if . . . then.

I add, delete, overwrite, reorder, sort, categorize, refine. Rules that make my life easier. Rules that help me struggle less. Rules for order and rules for efficiency. Rules to create structure. Rules for navigation.

I develop if . . . then tests for the rules:

1. If a rule prevents me from making a spontaneous choice then it’s too restrictive.
2. If a rule negatively impacts someone I love then it’s probably doing more harm than good.
3. If a rule was created more than five years ago then I may have outgrown it.
4. If a rule makes me sad, angry, tired or anxious then I need to question its origins.

The rules continue to evolve. I’m learning to break the ones that need breaking. Sometimes that’s freeing. It leads to laughter, spontaneous joy, new discoveries. Other times: resignation, regret, disappointment, confusion, fear.

This is life.

Life is not a TRS-80. Life is a wondrous, messy, untamable process.

So here is my newest rule: worry less about the rules.

Be more authentic. Embrace my quirks. Trust myself.

Perseveration: Brought to You by the Number 2

This is what social script fail looks like:

Restaurant hostess: “How are you today?”
Me: “Two!”
Hostess: “Great!”

Once we were seated at our table, my husband waited a few minutes before gently pointing out that when the hostess asked me how I was, I replied, “Two.”

I explained that I was expecting her to ask “how many?” not “how are you?” Once I’ve loaded a social script into my brain, it can be hard to stop it from executing. Even though I heard the words “how are you,” by the time I processed the question, my brain had already pulled the trigger on “two!” and I couldn’t have stopped it if I tried.

That’s perseveration in action. The same tendency that makes aspies prone to repetitive actions and thoughts also causes the “persistence of the same verbal response regardless of the stimulus.”*

In my head I’d already rehearsed the answer to the anticipated question–the stimulus–a couple of times. When the “stimulus” changed and the actual question was different from the rehearsed question, I couldn’t shift my response to something appropriate.

Admittedly I was distracted by a conversation we’d been having on the way to the restaurant so my dependence on the script was greater than normal. I was on social script autopilot. Thankfully, the hostess was deep in her own script (Great!) so she glossed right over my reply and whisked us off to a table for two without even blinking.

And for the rest of the day, whenever I randomly blurted out “Two!” my husband replied “Great!” and then we both burst out laughing.

Every. Single. Time.

*from Mosby’s Medical dictionary

Literally Speaking: I Just Need a New Pair of Shoes

This weekend I decided to buy new running shoes. Normally I go to a store like Kohl’s where I can just pull the boxes off the shelf and try on as many pairs as I want and stare at the choices for endless minutes without the distraction of a salesperson wanting to chat me up.

But I’m living in a new city–one without a Kohl’s nearby (yes, change is hard)–so off to the mall I went. After some bitching and moaning about not finding exactly what I wanted in the few stores I grudgingly walked through (it’s not like Kohl’s! everything’s different!), I discovered that Under Armour sells running shoes. I always wear Nikes but in the spirit of being less rigid, I decided to try something new.

The first pair of shoes I tried on weren’t right but I was determined to give this trying-something-new experiment a fair chance. I was studying the other choices when the salesdude came over to see if I wanted to try another pair.

salesdude: Did those not feel good?
me: They felt too stiff.
salesdude: What are you looking to do?
me: [slight pause while I try to process this apparent non sequitur then give up and go with the obvious] Buy shoes?
[nervous laughter: salesdude because he’s not sure if I’m joking, me because I know by his reaction that I’ve missed something obvious]
salesdude: I mean, like, are you going to use them for crosstraining, running–
me: Yes! Running! [and off I went on a dissertation about what I like in a running shoe]

The pause, the uncertain answer, the literal interpretation of an unexpected, off-script question–these are things that unmask me to strangers. One minute I’m the average customer and the next I’m the oddball who can’t answer a simple question and cares a little too much about how the soles of her running shoes are constructed.

But overall, in spite of the mall-induced crankiness, the shopping was a success because I got a new pair of these and I love them: