Today, I sat down to write about relationship conflicts in autism, and I realized that there was a topic I had to address before even considering tackling social challenges: empathy. I can't emphasize enough how misunderstood the experience of empathy in autism spectrum conditions has become. Let's start by making one thing very clear:
People with autism can experience empathy.
People with autism can experience empathy.
I'll say it again.
Autism does not equal a lack of empathy.
If you're not sure you understood me, go back a few sentences and repeat until you're confident you understand. Seriously.
This isn't meant to be rude or harsh; it's just the most important lesson someone looking to become informed about autism can learn. And, sadly, even many clinicians don't seem to have been clued in yet. I'm not the only one who's been told by a doctor or psychologist, "You can't be on the spectrum, you seem to care about people!" I have friends who've sat through clinical psychology classes listening to their clinically-licensed professors describe how autism is a lack of the ability to care about others, completely ignorant to the fact that their deeply-empathetic student in the front row was themselves autistic. I've listened to talks myself at the end of which I felt obligated to raise my hand and correct this damaging misconception.
Where does this idea come from?
Maybe it's a misinterpretation of research. I absolutely adore research and think it's the most important field for the improvement of autistic lives, but I won't pretend that taken out of context it can't become fuel for misunderstandings.
Research attempts to manipulate isolated variables in order to infer a causal relationship; these variables are often given a name that only partially captures the actual concept being measured, with the assumption that readers in the field will know what that variable name actually represents. If you've ever been on an elementary school gym team that labeled John, Suzie, Jake, and Will the "Blue Team" instead of calling them "The team including John, Suzie, Jake, and Will," you know that labels can be a valuable tool for simplification, even if no one on that team was looking particularly blue. Well, someone, somewhere, once upon a time, decided that "empathy" was a good enough variable name for the ability to intuitively infer the feelings and perspectives of others based on nonverbal communication, and soon enough autism researchers were talking about "empathy" in autism.
Let's pause and review what empathy means to the rest of the world: empathy is, according to the good people of Dictionary dot com, "the psychological identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another." Note that the dictionary does not specify that empathy should be achieved through mind-reading, without explicit communication, or in any way related to the ability to infer someone's emotions or thoughts by looking at their face.
(I should clarify that some research regarding empathy in autism does address the more mainstream definition of empathy; however, anyone finding that empathy doesn't exist in autism is probably talking about the variable-name version of the word.)
So, when well-intentioned parents, students, and teachers decided to learn a bit about autism, they were reading about a word given multiple meanings. Clinical psychologists, whose schooling is usually practice-focused rather than research-focused, may have even come across these studies and missed the part where empathy was defined for the purpose of the study. Add to that that a common experience in autism is difficulty putting emotions into words, and you have a whole bunch of people talking about how autistics "lack empathy," often completely unaware that the empathy we struggle with is a totally different empathy than that described in the dictionary.
Autism includes challenges in tasks related to empathy, but empathy itself is rarely something we lack.
Specifically, we often struggle with interpreting nonverbal cues. Often, we learn them, but it's not something that we just know without thinking about it. I remember being teased for laughing like an character in a book I'd been reading (rocking back and forth, head thrown back, slapping my knee), struggling to guess whether someone's tone was teasing or supportive, and completely missing the content of what people were saying as I tried to figure out whether their eyebrows were furrowed out of anger, or concern. When I discovered the show "Lie to Me," I was thrilled to finally have facial expressions explained in direct terms, and when a first boyfriend introduced me to anime, he loved that suddenly I was exhibiting extremely-exaggerated smiles and giggles to match those of his favorite characters. I'll probably never be able to tell what someone is thinking or feeling without asking what happened, or analyzing their lips and eyebrows, or thinking through their past experiences to find a connection to the current situation.
That said, once I know what someone is feeling, I feel it with them. Sometimes it's overpowering, because their emotions can feel clearer and sharper than most of my own. And, once I know what they're feeling, I may be hyperfocused on that feeling, magnifying it.
I've heard many people on the spectrum describe themselves as having more, rather than less, empathy than most people. Some drew this conclusion on their own, but others had it pointed out to them by friends who described them as empaths. Have you ever seen a person with autism when they're hyper-focused on their special interest? Can you imagine applying that extreme focus to a single emotion?
That doesn't mean that everyone with autism is an empath, and it's okay not to be. A common experience in autism is alexithymia, or impaired emotional awareness. Alexithymia can present as difficulty identifying emotions, difficulty putting emotions to words, or even a confusion between emotional and physical sensations. Alexithymia is not a symptom of autism, but rather highly comorbid with (or frequently occurring in people with) autism. This does not necessarily mean a lack of empathy; it may, however, make it more difficult to articulate emotions, or to correctly identify the emotions of others. And, some people with autism have expressed difficulties even beyond that; just as some people who are neurotypical may have impaired senses of empathy, some people with autism do as well. It doesn't mean it's caused by autism, or a defining trait of autism; it just happens for some humans.
Sometimes, there's a middle ground; a common experience for me is failing to recognize when my emotional responses differ from the emotional responses of others, and thus empathizing with the wrong emotion. For example, when I'm sick, I generally prefer to be left to myself until I feel better; my fiancé, on the other hand, prefers to be offered extra support. It took a little while to realize that when he was sick, he didn't prefer to be left alone, but felt abandoned if I withdrew to give him space. Once he'd explained that, I felt a rush of the emotion he must have felt when I seemed to offer less support when he wanted it most. Previously, I'd been empathizing with how I thought he felt, not with how he actually did feel. Now, I'll acknowledge that empathy is sharing the emotions of others, so empathizing with the wrong emotion may not count as empathizing at all; however, once I have the right emotion, I absolutely experience that emotion in full and can understand others' perspectives.
This may surprise you, but often people with autism actually take the role of "therapist" in their friend group. The answer is actually pretty obvious, if you think about it: we spend our lives learning how to understand the emotional reactions of others, while most people don't need to think about it to get by. It's the difference between a person who learned English by listening to their parents, and someone who's spent their life studying grammar and vocabulary; sure, the native speaker may have an advantage initially and in unusual colloquialisms, but after 30 years of constant study of English grammar, the person who had to study probably knows things about the language that the native speaker doesn't. Additionally, we are often predisposed towards pattern detection, which can sometimes allow us to pick up patterns in a person's frustrations or challenges of which they may not be consciously aware. And, finally, the role of "therapist" can be comforting, giving us a defined place in social contexts where we can better predict conversational structure.
This isn't the first time I'll write this metaphor, and probably won't be the last, but this is my favorite way to describe what it's like to be autistic, and I think it especially applies to empathy:
Most people in the world have brains that work like driving an automatic car. Sure, there are little social rules they have to learn along the way (like learning which pedal is the gas and which is the brake, how to indicate when they're about to shift lanes, how far to turn the steering wheel to get the appropriate adjustment), but there's a lot that the car does for itself. Then, my brain comes along and decides it's going to be a stick shift vehicle. So when I start to drive, I have to figure out which gear is which, how to shift gear and which gear to shift into, when to push down on the clutch and when to release it, how much gas to apply while releasing the clutch...even what to do when I stall. Early in life, this looks like a lot of stalling, gear grinding, and completely erroneous gear shifting, especially when there's no one able to teach any of it. With time and practice, however, I figure it out, and soon i know things about driving that most people can only guess at -- like what it feels like when my "car" is in first gear, what the signs are when I'll need to shift into third, and what mechanisms are at play when that shift is executed. Eventually, people outside the car will probably only notice that I'm driving stick if I'm exceptionally tired, or trying to do too many things at once, or am in an exceptionally challenging situation (like trying to get out of a parallel parking space on a steep hill during rush hour). Even then, with enough practice, I may be able to pull it off well enough that the difference isn't obvious. This is what empathy is like on the spectrum: we still have it, but we may need to learn signals and how to express it correctly in a more active way than neurotypicals.
ADVICE FOR NEUROTYPICALS INTERACTING WITH SOMEONE ON THE SPECTRUM:
ADVICE FOR AUTISTICS INTERACTING WITH SOMEONE NEUROTYPICAL:
If you're not sure you understood me, go back a few sentences and repeat until you're confident you understand. Seriously.
This isn't meant to be rude or harsh; it's just the most important lesson someone looking to become informed about autism can learn. And, sadly, even many clinicians don't seem to have been clued in yet. I'm not the only one who's been told by a doctor or psychologist, "You can't be on the spectrum, you seem to care about people!" I have friends who've sat through clinical psychology classes listening to their clinically-licensed professors describe how autism is a lack of the ability to care about others, completely ignorant to the fact that their deeply-empathetic student in the front row was themselves autistic. I've listened to talks myself at the end of which I felt obligated to raise my hand and correct this damaging misconception.
Where does this idea come from?
Maybe it's a misinterpretation of research. I absolutely adore research and think it's the most important field for the improvement of autistic lives, but I won't pretend that taken out of context it can't become fuel for misunderstandings.
Research attempts to manipulate isolated variables in order to infer a causal relationship; these variables are often given a name that only partially captures the actual concept being measured, with the assumption that readers in the field will know what that variable name actually represents. If you've ever been on an elementary school gym team that labeled John, Suzie, Jake, and Will the "Blue Team" instead of calling them "The team including John, Suzie, Jake, and Will," you know that labels can be a valuable tool for simplification, even if no one on that team was looking particularly blue. Well, someone, somewhere, once upon a time, decided that "empathy" was a good enough variable name for the ability to intuitively infer the feelings and perspectives of others based on nonverbal communication, and soon enough autism researchers were talking about "empathy" in autism.
Let's pause and review what empathy means to the rest of the world: empathy is, according to the good people of Dictionary dot com, "the psychological identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another." Note that the dictionary does not specify that empathy should be achieved through mind-reading, without explicit communication, or in any way related to the ability to infer someone's emotions or thoughts by looking at their face.
(I should clarify that some research regarding empathy in autism does address the more mainstream definition of empathy; however, anyone finding that empathy doesn't exist in autism is probably talking about the variable-name version of the word.)
So, when well-intentioned parents, students, and teachers decided to learn a bit about autism, they were reading about a word given multiple meanings. Clinical psychologists, whose schooling is usually practice-focused rather than research-focused, may have even come across these studies and missed the part where empathy was defined for the purpose of the study. Add to that that a common experience in autism is difficulty putting emotions into words, and you have a whole bunch of people talking about how autistics "lack empathy," often completely unaware that the empathy we struggle with is a totally different empathy than that described in the dictionary.
Autism includes challenges in tasks related to empathy, but empathy itself is rarely something we lack.
Specifically, we often struggle with interpreting nonverbal cues. Often, we learn them, but it's not something that we just know without thinking about it. I remember being teased for laughing like an character in a book I'd been reading (rocking back and forth, head thrown back, slapping my knee), struggling to guess whether someone's tone was teasing or supportive, and completely missing the content of what people were saying as I tried to figure out whether their eyebrows were furrowed out of anger, or concern. When I discovered the show "Lie to Me," I was thrilled to finally have facial expressions explained in direct terms, and when a first boyfriend introduced me to anime, he loved that suddenly I was exhibiting extremely-exaggerated smiles and giggles to match those of his favorite characters. I'll probably never be able to tell what someone is thinking or feeling without asking what happened, or analyzing their lips and eyebrows, or thinking through their past experiences to find a connection to the current situation.
That said, once I know what someone is feeling, I feel it with them. Sometimes it's overpowering, because their emotions can feel clearer and sharper than most of my own. And, once I know what they're feeling, I may be hyperfocused on that feeling, magnifying it.
I've heard many people on the spectrum describe themselves as having more, rather than less, empathy than most people. Some drew this conclusion on their own, but others had it pointed out to them by friends who described them as empaths. Have you ever seen a person with autism when they're hyper-focused on their special interest? Can you imagine applying that extreme focus to a single emotion?
That doesn't mean that everyone with autism is an empath, and it's okay not to be. A common experience in autism is alexithymia, or impaired emotional awareness. Alexithymia can present as difficulty identifying emotions, difficulty putting emotions to words, or even a confusion between emotional and physical sensations. Alexithymia is not a symptom of autism, but rather highly comorbid with (or frequently occurring in people with) autism. This does not necessarily mean a lack of empathy; it may, however, make it more difficult to articulate emotions, or to correctly identify the emotions of others. And, some people with autism have expressed difficulties even beyond that; just as some people who are neurotypical may have impaired senses of empathy, some people with autism do as well. It doesn't mean it's caused by autism, or a defining trait of autism; it just happens for some humans.
Sometimes, there's a middle ground; a common experience for me is failing to recognize when my emotional responses differ from the emotional responses of others, and thus empathizing with the wrong emotion. For example, when I'm sick, I generally prefer to be left to myself until I feel better; my fiancé, on the other hand, prefers to be offered extra support. It took a little while to realize that when he was sick, he didn't prefer to be left alone, but felt abandoned if I withdrew to give him space. Once he'd explained that, I felt a rush of the emotion he must have felt when I seemed to offer less support when he wanted it most. Previously, I'd been empathizing with how I thought he felt, not with how he actually did feel. Now, I'll acknowledge that empathy is sharing the emotions of others, so empathizing with the wrong emotion may not count as empathizing at all; however, once I have the right emotion, I absolutely experience that emotion in full and can understand others' perspectives.
This may surprise you, but often people with autism actually take the role of "therapist" in their friend group. The answer is actually pretty obvious, if you think about it: we spend our lives learning how to understand the emotional reactions of others, while most people don't need to think about it to get by. It's the difference between a person who learned English by listening to their parents, and someone who's spent their life studying grammar and vocabulary; sure, the native speaker may have an advantage initially and in unusual colloquialisms, but after 30 years of constant study of English grammar, the person who had to study probably knows things about the language that the native speaker doesn't. Additionally, we are often predisposed towards pattern detection, which can sometimes allow us to pick up patterns in a person's frustrations or challenges of which they may not be consciously aware. And, finally, the role of "therapist" can be comforting, giving us a defined place in social contexts where we can better predict conversational structure.
This isn't the first time I'll write this metaphor, and probably won't be the last, but this is my favorite way to describe what it's like to be autistic, and I think it especially applies to empathy:
Most people in the world have brains that work like driving an automatic car. Sure, there are little social rules they have to learn along the way (like learning which pedal is the gas and which is the brake, how to indicate when they're about to shift lanes, how far to turn the steering wheel to get the appropriate adjustment), but there's a lot that the car does for itself. Then, my brain comes along and decides it's going to be a stick shift vehicle. So when I start to drive, I have to figure out which gear is which, how to shift gear and which gear to shift into, when to push down on the clutch and when to release it, how much gas to apply while releasing the clutch...even what to do when I stall. Early in life, this looks like a lot of stalling, gear grinding, and completely erroneous gear shifting, especially when there's no one able to teach any of it. With time and practice, however, I figure it out, and soon i know things about driving that most people can only guess at -- like what it feels like when my "car" is in first gear, what the signs are when I'll need to shift into third, and what mechanisms are at play when that shift is executed. Eventually, people outside the car will probably only notice that I'm driving stick if I'm exceptionally tired, or trying to do too many things at once, or am in an exceptionally challenging situation (like trying to get out of a parallel parking space on a steep hill during rush hour). Even then, with enough practice, I may be able to pull it off well enough that the difference isn't obvious. This is what empathy is like on the spectrum: we still have it, but we may need to learn signals and how to express it correctly in a more active way than neurotypicals.
ADVICE FOR NEUROTYPICALS INTERACTING WITH SOMEONE ON THE SPECTRUM:
- Communicate directly, and remember that we absolutely experience emotions. This doesn't just mean telling us what you're feeling, but also asking what we're feeling. A frequently-missed irony in the autism-empathy discussion is that while we on the spectrum sometimes empathize incorrectly with neurotypicals, neurotypicals often also empathize incorrectly with us. Some of our experiences are completely foreign to you, from the panic we feel when a plan is changed to the physical pain that overstimulation can elicit. The odds are, we're putting a good deal of effort not only into empathizing with you, but also into expressing our empathy in a way that you can recognize and benefit from. We'll get it right a lot more often if you're willing to communicate directly and explicitly, tell us what you need, and explain when we ask for clarification.
ADVICE FOR AUTISTICS INTERACTING WITH SOMEONE NEUROTYPICAL:
- Ask for clarification when you need it. People are generally more than happy to explain if I say "I'm so sorry, I'm not sure how best to support you right now, what do you need?" When I was younger, before I even knew I was on the spectrum, I would ask "What are you feeling?" as casually as some people ask "How are you?" This works especially well with people who know I'm on the spectrum, but it's also not an entirely foreign question: we've all seen the TV show psychologist who asks, "And how did that make you feel?" Be respectful if people prefer not to explain, but those who want you to understand them are often willing to help you get there. You are not doomed to an existence of emotional isolation just because some things aren't intuitive.
- When experiencing empathy, the part we sometimes forget to do is actually verbalize it. It can be easy to get lost in our own minds, and forget that while neurotypicals read one another quite well, they often misread us. Being willing to say "I hear you, and I can understand why that's painful" can make the difference between someone recognizing our empathy and someone assuming it doesn't exist.
- Be direct about your own feelings and needs. Just like you're trying to empathize, you deserve to receive empathy as well. This may be difficult during moments of high emotion; I sometimes struggle to verbalize when distressed, but find that I can still type. It may be easiest to explain your needs after a high-emotion moment has passed, or before it even occurs.
ADVICE FOR PARENTS OF AUTISTIC CHILDREN:
- First and foremost, recognize your child's potential. If your child sees you crying, they may not know why you are sad, but they will probably recognize that you are. Explaining the emotion and why you're feeling it can help them to build the emotional awareness that will help them to understand you, and others, as they grow up.
- Actually, even MORE first and foremost: if you're uncertain how to approach a situation or need with your child, ask an autistic adult. We probably know more about being an autistic child than any clinician or teacher who's never been one, and even if we don't know what you should do, we probably know what was damaging in our own childhood.
- Ask about your child's emotions, and recognize that they may not always be able to articulate them. In return, encourage them to be comfortable asking about your emotions, and keep an open dialogue. Always keep it positive; the goal is never to make your child feel like they're failing when they don't understand their own emotions or the emotions of others, or to make them feel like they're constantly being drilled on the topic. But, practice expressing and hearing about emotions can both validate the sense that emotions are confusing, and give practice finding ways to express them and feel heard. Honestly, I think a lot of neurotypical children would benefit from this as well, but I suppose I don't have experience being a neurotypical child.
- Consider that your child may learn about empathy from unexpected sources. Some of my favorite sources when I was younger were anime (which has extreme, exaggerated facial expressions and vocal tones -- think of how big the font is in books for beginner readers to make each shape easily discernible), sitcoms (which apply silly drama and extreme emotion to real human faces), and, as I got older, the internet. I would read through online comments analyzing which sentences tended to precede arguments, because this helped me recognize what caused hurt feelings and what sentiments could resolve that distress.
- Use clear and direct explanations, including "why" explanations, and don't be afraid to oversimplify. I'm eternally grateful to my mother for some of the things she was willing to spell out for me, including that the cashier at the grocery store talked to so many customers all day, she was much too tired from work to really enjoy hearing my life's story or the plot of the book I was reading; or that by talking obsessively about my special interest, I made others feel like I didn't care about their presence in the conversation, and that I could show that I cared about them by raising topics where they could participate as much as I did. I was confused by simple "this is the rule" explanations, but I always took explanations of why a rule existed to heart. I still deeply value the bow at the end of a musical conference, because it was explained to me that it expresses to your audience that you are grateful to them for taking the time to listen to you; that reciprocity remains beautiful to me, 23 years after it was taught to me.
- Finally, I repeat (yes, I know I'm giving this two whole bullet points; it's that important): when in doubt, ask an autistic adult. Enough of the world buys into misconceptions about autism that the risk of getting the wrong advice from a seemingly-informed neurotypical is not low. There are communities of people on the spectrum that welcome parents of autistic children; make sure you're asking in an appropriate setting and with full respect for the people you're asking, and you'll likely find that we're thrilled to encounter parents who approach their child's autism with awareness that it may come with unusual needs.
Best explanation, best advice, best everything I have ever read on autism and empathy! Love your work!!! ��
ReplyDelete