E is for Empathy

EThis is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.

E is for Empathy

I know, right?

The “empathy question” is one of the biggest enemies to autism acceptance. I read an award-winning philosophical treatise on the nature of autism (that I will not even name here, because it is so awful I don’t want it to get any recognition at all) that claimed that Autistic people do not have empathy and therefore are not fully human. The author said that Autistic people could never develop community, due to this alleged lack of empathy. Moreover, the author made a philosophical argument that Autistic people should not be permitted to vote because our supposed lack of empathy meant we could not truly be citizens in the fullest sense of the word and had no place participating in the decisions of the nation. This isn’t some fringe book — like I said, this book won awards. And Temple Grandin wrote the foreword to it! I can only hope she was really busy that week and didn’t have the chance to actually read the text because she has said so many other things that do not agree with the message of that book.

News reporters tell audiences the “truth” about our lack of empathy. Every time there is a mass killing, experts are trotted out to speculate about the possibility of the killer being on the autism spectrum (and, in most cases, the killer turns out not to be Autistic) . . . because “everyone knows” about our stunning lack of empathy and who is more likely to kill lots of people than someone with no empathy? Right?

This is so very damaging. People who have never met me have said I cannot enter their house simply because they know I am Autistic and they saw a frightening news story about a killer. It is long past time to put the “empathy question” to rest. Here’s the short version of the “empathy answer” for you: of course we have empathy!! It doesn’t look the same as your (non-autistic) empathy, but we have it. Or at least many of us have it. And if we don’t have it, that’s no reason to dehumanize us and make our lives more difficult.

Okay, maybe the short answer wasn’t so short after all.

Now for the longer version.

The first thing to think about when considering the empathy of Autistic people is the definition of empathy.  The simplest definition of empathy is “the ability to understand and share the feelings of another.” It looks simple, but right away we can break that into two parts: understanding other people’s feelings and sharing other people’s feelings. We Autistic people can do both of those things but, like many other aspects of everyday life, we sometimes need a little assistance, mentorship, and accommodation.

I’m not the first person to break empathy down into two separate processes. Academic/medical fields, such as neuroscience, speak of “cognitive empathy” and “affective empathy.” Cognitive empathy loosely correlates to the “understanding” half of the definition above while affective empathy corresponds to the “sharing” half. These are two very different mental and emotional skills so, even though they are interrelated (and both have a contribution to the aspects of autism that cause others to misunderstand our capacity for empathy), I need to consider them one at a time.

Cognitive empathy means knowing how someone else is feeling. We cannot share their feelings if we cannot see or understand them. There are many reasons why we can have difficulty seeing how someone else is feeling.

Some people will bring up an idea called “theory of mind” and say that we cannot see other people’s emotions because we do not have theory of mind. To have theory of mind is to understand that other people have minds and that those minds contain thoughts, knowledge, ideas, and desires that are different from the thoughts, knowledge, ideas, and desires in our own minds. It is this belief that we have no theory of mind that led John Horgan, former science writer for Scientific American, to declare in 1999 that “autistics often seem to make no fundamental distinction between humans and inanimate objects, such as tables and chairs.”  (thank you, Melanie Yergeau, for finding that quote.)

The idea that we lack theory of mind is a false one that goes back to something called the “Sally-Anne Test.” Children were shown a situation in which two dolls, named Sally and Anne, had a marble. Sally puts the marble in a basket and leaves the room. While she is gone, Anne moves the marble from the basket to a box. The children were asked where Sally would look for the marble when she returns to the room. Of course, the answer the researchers are looking for is that Sally will look in the basket. If a child says that Sally will look in the box, they are assuming that Sally has access to the content of the child’s mind and can see things that happened while she was out of the room. The assumption in this case is that the child is lacking in theory of mind.

Typically developing children “fail” the Sally-Anne test until around age four or five. Children with Down Syndrome show a similar pattern, easily grasping Sally’s different perspective on things by around age four or five. But in one study, conducted by Doctors Simon Baron-Cohen, Alan M. Leslie, and Uta Frith in 1985,  around 80% of Autistic children were not able to pass the Sally-Anne test, despite having a higher testable IQ than the typically-developing and Down Syndrome age peers used as controls.

This single study has been cited again and again and extrapolated to all Autistic people, not just young children. The thing that is forgotten is that autism is a developmental delay, not a developmental halt. Just because 80% of the children tested by Baron-Cohen, Leslie, and Frith could not pass the Sally-Anne Test at that point in their development, it does not follow that they never will or that no other Autistic people will develop theory of mind at some point in their lives. Fewer Autistic teens fail the Sally-Anne Test. Almost all Autistic adults who have means of communication (which is to say, the majority of Autistic adults) are able to easily pass the Sally-Anne test.

Theory of mind is not a simple on-off switch but rather a wide range of skills that are developed over time. Children who are born Deaf and not provided with sign language in early life not only struggle with language acquisition later but also fail the Sally-Anne Test. Yet I have had many friends who were born Deaf and not provided sign language until later in life who demonstrated plenty of theory of mind by the time I met them as teens or adults.

More recently, researchers have discovered that Autistic children are not failing the Sally-Anne Test so much as the Sally-Anne Test is failing Autistic children. In 2013, researchers in Queensland, Australia, devised a new test for theory of mind called the “Dot-Midge Test”. It is based on the Sally-Anne Test, but with a significant difference: the test is made into a game in which the child stands the chance of winning a toy. Just as in the Sally-Anne Test, Midge hides the toy, then leaves the room. Dot then moves the toy. The difference is that the child is told that they are in a contest with Dot and Midge.  First, the child chooses either Dot or Midge to look for the toy. If they find it, they get to keep it. If they don’t find it, the child gets a turn to look for the toy. Again, if the child finds the toy, the child can keep it but if the child does not find the toy, they don’t get to have it.

When Autistic children were given the Sally-Anne Test, with the only motivation being getting the right answer, only 13% passed. But when the children were given the Dot-Midge Test with the motivation being to win a prize, 74% passed — choosing Midge to go first because the child knew that Midge had a false idea of where the toy would be. Neither of these percentages are in line with random chance — they are both far enough away from 50% to make it clear that something is inadequate about the Sally-Anne Test (some researchers speculate that the standard “reward” in the Sally-Anne Test, i.e. the social reward of being pleasing to the researchers, is not enough reward for the average Autistic child to be willing to work the problem through sufficiently.) It also becomes clear that there is a whole lot more theory of mind going on in the Autistic brain than has previously been credited.

So if we have theory of mind after all, why do we struggle so much with seeing people’s emotions? This is an important question. I am saying that we do have empathy but we often don’t realize that there is something to be empathetic about. So it is important to talk about why we miss those social cues.

One barrier is the ability to read and interpret facial expressions and body language. I think I have gotten pretty good with that skill, but I have worked at it for 40+ years and I still can’t really do it in real time. I can interpret facial and body language in a video (but not in still photographs) or, because I have high motivation and strong visual memory skills, I can re-play an experience after the fact and figure out what happened. But I am clueless in the moment and that is because I am not really using the same brain circuits that allistic (not autistic) people use when they interpret faial and body language. For allistic people (who do not have some other neurological condition that affects reading body language) figuring out what someone is feeling by looking at them and listening to the tone of their voice is nearly instantaneous. There is no real effort involved. It just “happens.”

When I try to interpret what is going on inside someone, it takes a lot of effort. I have to analyze the details of their posture and voice and apply logic and memory of many years of studying many books about body language. It takes so much effort that I just cannot do it in the middle of an interaction with someone. Sometimes I have only realized what was happening on the emotional landscape years after a conversation took place. Many past interactions are still mysteries to me. I have an easier time picking out emotions in movies and television shows because actors are intentionally broadcasting their body language loudly — the physical version of “speaking from the diaphragm,” as it were. I have put, and still do put, a tremendous amount of effort into learning to read body language and I am still really, really bad at it. And I accept that I always will be. I still work to learn what I can, but I know I will never approach “normal” levels of interpretation. Ever. In my entire life. And I’m (mostly) okay with that.

Brian King, in his excellent book, Strategies for Building Successful Relationships with People on the Autism Spectrum: Let’s Relate!, talks about the futility of trying to teach body language interpretation to Autistic children:

My greatest frustration with the social skills classes of my experience is their insistence on trying to get our kids to make their brains do things that their brains do not do — recognize nonverbal communication, recognize vocal tone, recognize body posture and body language. If your brain does not pick that stuff up, you cannot make it. People have told me my entire life to look at body language, expression, and look at this, look at that. Guess what? It doesn’t work and I will explain to you the reasons why that is and what you can do about it.

King goes on to do just that — explain the difficulties and give solutions. The best solution for not being able to read body language? Teach the allistic people to make their feelings explicitly known and teach the Autistic people to check-in with others to explicitly ask what they are feeling. You will find that Autistic people have a tremendous amount of empathy when we understand the emotions around us! You cannot claim we have no empathy when there are no accommodations in place to help us understand the emotional content surrounding us.

Another issue is alexithymia. Alexithymia is the word for not being able to recognize and put words to internal emotional states. People with alexithymia do have emotions, but we have a difficult time telling the difference between physical conditions, like illness, and emotional conditions with physical manifestations, like sorrow. Anyone can have alexithymia for a variety of reasons (PTSD from emotional trauma is a common cause.) Approximately 10% of the general population has alexithymia but studies indicate that as much as 85% of people with autism have some degree of alexithymia and an estimated 50% of us have severe alexithymia.

This is why I so often stress helping Autistic children learn what their emotional states are. All children can benefit from emotional mentoring, but Autistic children are in extra need of this sort of assistance. “It looks like you didn’t like it when your sister took your toy away. I see your face is red and you are crying. Are you feeling angry? Are you feeling sad?” Conversations like these can help children learn to put names on their emotional states and can help them to recognize the physical symptoms of emotions. This latter is very important — I am nearly 50 years old and I still don’t know when I am agitated or upset unless I remember to watch for symptoms like rocking back and forth more than usual, tense muscles, a churning sensation in my chest, tears, and so on. I have emotions, but I am not able to see them very clearly and I have to apply logic to understanding my own emotions just as I apply logic to understanding the emotions of others.

Our primary difficulties with empathy lie in the realm of cognitive empathy. Help us understand what you are feeling. Help us understand what we are feeling. Help us to see a bigger emotional picture and you will find that we are very empathetic. Some researcher have suggested that, when it comes to affective empathy, not only are we not deficient, but we have more than usual — sometimes too much!

Affective empathy — the ability to feel “with” someone — is strong in us.  Henry and Kamila Markram have put forth a concept called the Intense World Theory.  The idea is that the autistic brain is “supercharged” and, as a result, the world is too intense to bear. Sounds are too loud and painful, lights are too bright, smells are too strong, and feelings are too intense. The more intense the perception of the world, the more the Autistic person pulls away and builds a sort of “bubble” around themselves for protection. While most allistic people are able to “filter” the world so that it isn’t so overwhelmingly intense, Autistic people get a massive flow of all data simultaneously and need to “shut off” in order to cope with it all.

Emotions coming from within can be just as overwhelming as sensory input coming from outside. If we cringe from the strong feelings of others and shut down at the strong feelings in ourselves when confronted with the strong feelings of others, we are not demonstrating a lack of empathy. We are demonstrating extreme sensitivity that should be recognized and respected. When we express empathy or sympathy by taking things to a cerebral level and doing research to try to help you with your struggles, we are not being “cold and clinical,” we are showing our love in a way that is healthy and safe for us. Do not expect us to harm ourselves in order for you to feel as if we care about you. Respect our ways of being, our ways of knowing, our ways of loving.

But what I said above? Maybe we don’t have empathy? Well…. maybe we don’t. Maybe what I think is empathy in myself is actually sympathy. I have no objective way of knowing. All I can say is that I do care and I have seen countless other Autistics of all ages and walks of life expressing that they care. Isn’t it enough to care, no matter what that caring actually is (sympathy, empathy, logical conclusions) or how that caring is expressed?

I’d like to leave you with Cynthia’s excellent writing on empathy. I stumbled across her blog entry just as I was finishing up writing this one and I immediately knew I wanted everyone to read it as well. She covers some of the same ground I just have and she covers other ground I didn’t walk on in this essay. And she links to another essay about empathy. Don’t stop with mine. Or Cynthia’s. Or the one she linked to. Read more. Learn more. Formulate your own ideas about autism and empathy. If you take away only one idea from me to inform you in that adventure of exploration, let it be that we are human beings with real emotions, real needs for support, and deserving of real respect and dignity. Do not let all that speculation about whether we have or lack empathy cause you to lose your own empathy in considering us. Thank you.

 

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7 responses to this post.

  1. […] read through the post E is for Empathy – it highlights a number of problems with the idea that autistics have no empathy (talk to my […]

  2. Posted this with a rec on my blog for signal boosting. And I didn’t know about the Dot-Midge Test – yay for the researchers who came up with that, and thanks for letting us know about it! :)

    :) tagAught
    (I really like this entire series that you’re doing, by the way.)

  3. […] E is for Empathy I know, right?The “empathy question” is one of the biggest enemies to autism acceptance. I read an award-winning philosophical treatise on the nature of autism (that I will not even name here, because it is so awful I don’t want it to get any recognition at all) that claimed that Autistic people do not have empathy and therefore are not fully human. The author said that Autistic people could never develop community, due to this alleged lack of empathy.Moreover, the author made a philosophical argument that Autistic people should not be permitted to vote because our supposed lack of empathy meant we could not truly be citizens in the fullest sense of the word and had no place participating in the decisions of the nation. This isn’t some fringe book — like I said, this book won awards. And Temple Grandin wrote the foreword to it! I can only hope she was really busy that week and didn’t have the chance to actually read the text because she has said so many other things that do not agree with the message of that book.  […]

  4. Hi. Your “F is for…” page won’t let me comment, so I’ll comment on it here. I’m really appreciating this series! Your “F is for…” page is very educationaland engaging but what I want to comment on is my favorite video there: Tim Chan from Australia, facilitated by his mother, Sarah. It is so moving because of the obvious total respect and love these two people show for one another; almost makes me cry. Thanks.

    • Thank you! (I fixed F to allow comments – I forgot to click that box before I published.) I love Tim’s video, too. So much love and he is so happy to share his thoughts with others. It is such a happy and loving and joyful video!

  5. “I read an award-winning philosophical treatise on the nature of autism […] that claimed that Autistic people do not have empathy and therefore are not fully human.”

    Well, it helps to know where that nonsense comes from, at least. *sigh* Just last year, a therapist told me repeatedly that I’m a bad person because I have no empathy, that it not possible for any autistic person to have empathy… (I told this therapist that calling me a bad person for having no empathy was like accusing someone of being deaf and then getting angry at them for flinching away from loud noises. Alas, shrinks have no tolerance for metaphors, so I was also reprimanded for using one to explain something.)

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