by Rachel Cohen-Rottenberg
It’s an oft-repeated and erroneous stereotype that autistic people lack empathy.
When I hear another iteration of this myth, I have an immediate, visceral reaction that combines impatience at its perpetuation with a keen understanding of its power to wreak havoc on the lives on autistic people. When it comes to our ability to find partners, to form friendships, to be welcomed in community, and to find work — particularly in the helping professions — this myth can have a devastating impact. It’s one of the main reasons that so many autistic people remain in the closet, living their entire lives in fear of exposure.
Ironically, in the face of the myth of nonexistent autistic empathy, I have an intensely empathetic response. I intuitively recognize the potential for harm and suffering to millions of people, and I feel grief, anger, and a powerful need to speak to the issue.
Once my anger and my adrenalin rush subside, I’m able to take a good long look at where the myth comes from. I find that it derives, in part, from an oversimplification of what empathy means. The popular media likes to disseminate oversimplifications of all kinds, and autistic people often find ourselves stereotyped in ways that would be impossible if we lived in a culture in which asking the right questions — and listening to the answers — were considered of any value.
Unfortunately, we don’t live in such a culture, and so, even as I write, I am aware that my impact is limited. The people who read these words, and who are inclined to reflect upon them, will come away understanding something new. Those who never read these words, or who read them and dismiss them for their own personal reasons — well, there is little I can do to change their minds.
All I can do is to speak my truth, as clearly as I can.
So let’s look at the question of empathy. There are three types: cognitive empathy, emotional/affective empathy, and expressed empathy.
Cognitive empathy has to do with being able to visually and intuitively read subtle nonverbal signals in order to understand what is going on in the mind of another person. It includes being able to read facial expressions, body language, and the emotions communicated by the eyes.
In general, people all along the autism spectrum have difficulty with cognitive empathy based on visual nonverbals. I certainly do. I can read some nonverbals, but the more subtle ones elude me, except when they come from a) other people on the spectrum, whom I seem to have no trouble reading at all, or b) non-autistic people with whom I have a relatively long acquaintance. With someone I know well, I can see the subtle signals, because I’ve gone through a process of learning about the person and being able to associate the signals with the person’s emotions.
When relating to non-autistic people, my process isn’t intuitive, but after my 53 years on the planet, it has become quite reflexive. For example, I can read my husband’s nonverbal signals relatively well. We’ve known each other for over ten years, and he takes care to verbalize his feelings as much as he can. Both the extended time we’ve spent together and his ability to verbalize result in my increased capacity to link the signals with their source.
In other words, like many autistic people, I’ve grown and learned over the course of a lifetime.
Emotional/affective empathy is entirely different from cognitive empathy. It is what most people consider true empathy.
Emotional/affective empathy has to do with the emotional response triggered in the face of the experience of another person. According to recent studies (such as Markram and Markram’s 2007 The Intense World Syndrome: An Alternative Hypothesis for Autism, and Adam Smith’s 2009 The Empathy Imbalance Hypothesis of Autism), autistic people have extremely high levels of emotional/affective empathy. In the online world, there is a veritable treasure trove of writing by autistic people and our loved ones that bears out the conclusions of both studies.
The Markram study and the Smith study reflect my experience far more accurately than say, the work of Simon Baron-Cohen, who has never given any credence to the idea that the emotional/affective empathy of autistic people might exceed that of others. How sensitive am I? If a person next to me is suffering, I feel it as though the suffering were mine. If the person next to me is joyful, I feel especially happy. If I see a film in which a person is being shot, I immediately imagine the bullets tearing into my own body. I have read story after story by autism parents who say that their children cry when they see scenes of animals suffering; others say that their children can always pick up on all the emotions in a room. I share these experiences.
I can feel absolutely drenched in the emotions of other people, even when people are not expressing their feelings directly, and I feel those emotions very intensely. I can walk into a crowded room and feel all the emotions of the people there; being so empathic can be absolutely overwhelming. From what I understand, most non-autistic people do not experience anything close to that kind of empathy, but it’s a common experience for those of us on the spectrum.
How can I pick up all those emotions in the absence of reading the nonverbal signals? On some level, I probably register all the visual nonverbals, but I can’t parse them individually or respond to them in the way that a non-autistic person would. In other words, I can literally see them all — and they have a clear emotional impact — but I can’t read them in real time.
I also have a kind of intuition, a sixth sense about people that can never be measured in any objective fashion. As I’ve learned from hard experience, the only time that my intuition fails me is when I ignore it.
I’m also coming to recognize that I use another sense, one that is hyperacute and entirely overlooked in studies of how autistic people perceive the world: my hearing. I can read the subtle details of vocal tones very, very well, especially when people are using vocal tones that don’t match the content of their words. If a person is upset or angry, but is using words that seek to mask it in some way, I can tell right away. It’s as though I am hearing strands of music that are out of harmony.
My experience as a musician, in which I feel myself inside the emotion of the music and feel the power of the music inside me, extends to hearing such signals as vocal tones, or the relative force with which someone brings his or her hand down on a table, or how quickly a person is walking, or with what determination an individual’s feet hit the floor. It’s an intuitive way for me to gauge what is going on in my environment, especially regarding the moods of other people. And because I don’t filter sound well, and have very little ability to put any sound in the background, I miss nothing when it comes to my auditory experience.
I am quite certain that my hearing enables me to read the subtleties of emotional states in other people, because when I go out into the world and prevent auditory overload by wearing earplugs, I avoid emotional overload as well. It’s a blessed relief to be able to go out into public and hold people’s emotions at a distance, let me tell you.
Expressed empathy has to do with responding to the feelings and thoughts of another person. Clearly, it’s not enough to feel empathy. It has to be expressed so that the other person knows that you understand and feel compassion.
This type of empathy is almost entirely a cultural construct. In some cultures, when you see a person in pain, you give a hug, or verbalize your concern, or invite the person to have a conversation. In other cultures, simply being a quiet, compassionate listener is considered appropriate.
Personally, I tread fairly carefully about how I express my empathy, because in a multicultural, neurodiverse society, I am sensitive to the fact that a response that might work for one person might not work for another. Given my own sensory and emotional sensitivities, I make no assumptions about what another person might need. So, for example, instead of rushing in and giving a person a hug, I will ask if the person would like a hug. This kind of concern, I think, shows a fairly sophisticated level of emotional empathy, although I admit that it will sometimes leave me stymied as to what to do, which is ultimately unhelpful to the person concerned.
In general, I tend toward the practical. I will begin by verbally acknowledging the other person’s feelings; I grew up when doing so was simply considered good manners, and being drilled in good manners as a child has greatly helped my level of conventional empathetic expression. But I feel most comfortable rolling up my sleeves and getting to work. Does the person need me to do some grocery shopping? Bring a meal over? Help with chores? Watch the kids? To me, words aren’t enough. They have to be followed up with action.
As far as conventional measures of expressed empathy go, I am fortunate in being verbal. For many autistic people who have difficulties with verbal communication, responding in culturally acceptable and conventionally understandable ways is impossible. And for autistic people who are even more sensitive than I am, there are limitations to being able to respond at all, because most environments generate such a high degree of emotional and sensory overload that withdrawal becomes a necessity.
And yet, if you pay attention, you will often find that autistic people express empathy in a myriad of ways, many of which are quite unexpected in any conventional sense but reflect true emotional understanding. For example, I recently read a piece by an autism parent who said that, though her child has difficulties with reading nonverbal cues and understanding social communication, he will come over to her when she is upset and say, “I love mama.” He knows what she is feeling, and he expresses his care and concern. It’s enough to melt your heart.
And of course, nonverbal autistic people who can express themselves in text often show great responsiveness to other people and a keen sensitivity to other people’s feelings.
One difficulty with much autism research is that it privileges conventional experiences and expressions of empathy, and considers non-normative expression an impairment. It begins with a definition of cognitive empathy as being able to visually parse nonverbal signals, rather than being able to hear signals, intuit them, or see them all at once; it defines emotional/affective empathy without the merest consciousness of the extreme levels of emotional sensitivity that many of us experience; and it uses culturally constructed norms of empathetic expression as a measure of what is true and right.
Of course, no test can measure the kind of emotional empathy that many autistics experience. I have started training as a personal care assistant to a child with multiple disabilities. What test can possibly measure the ways in which my heart and soul flow outward to him? What test can measure the level of attentiveness, of concern, of love that I feel for him? What test can pick up the sheer happiness it gives me to care for him? Who can measure how much I respect him, and how clearly I see the human soul inside him?
No test, no research, no science can prove love, or measure awareness, or gauge emotional sensitivity, especially when that sensitivity is literally off the charts. Unfortunately, in the absence of a scientific test, many “experts” spend no time at all listening to the experiences of the people they purport to understand. They listen to other professionals, they read medical journals, and they go to conferences, but how many of them listen to the life experiences of the people they’re researching? Not many. Those who do should be held up as role models.
And, unfortunately, too many lay people look to credentials as opposed to experience when it comes to understanding non-normative conditions. Recently, in response to one autistic person’s upset at mainstream theories of impaired autistic empathy, an autism parent said that the experts should know all about it, since they’ve been studying the issue for years. And those of us who have lived it for even longer? If we were talking about the difference between a non-Jewish scholar of Judaism and a practicing Jew, most people would say that the practicing Jew would be the expert on Judaism. And yet, autistic people are rarely accorded this level of respect.
A refusal to listen to our experiences and to be sensitive to the real-life consequences of pervasive stereotypes shows a problematic relationship with empathy, to put it mildly. In the midst of this lack of true autism awareness, any assertion that autistic people lack empathy is nothing less than a textbook case of the pot calling the kettle black.
© 2011 by Rachel Cohen-Rottenberg