On the Subject of Empathy

by Fiona Wallace

…because nearly everyone else seems to be writing about it.

At the age of three or four, I had a meltdown watching a Punch and Judy show. This was the seventies; Punch and Judy was ‘traditional’ back then, that is, Mr Punch had a stick nearly as big as himself, which he used to beat Mrs Punch and their baby, and the policeman, and anyone else with the temerity to tell him he was wrong.

I can remember the puppet Punch, with its hooked nose (antisemitism, much?) beating its wife while shrieking That’s the way to do it! That’s the way to do it!

I started screaming.

Around me several dozen children were laughing so much the tent seemed to shake and billow around me. They saw Mr Punch hitting and hitting, and to them it was the funniest thing imaginable. You know what small children are like when they find something enormously funny; they jump out of their seats, they wave their hands, they shout encouragement.

And I kept screaming.

The next thing I remember I was outside, with my parents apologising to other adults for the fuss and laughing at how I’d got so worked up over a puppet show.

[I hate puppets. So often they’re used to portray behaviour that would never be acceptable under any other circumstances.]

And until I was diagnosed, I had no explanation for why thirty children found that violence acceptable and I did not.

When Punch hit his wife, he was hitting me. I could feel the blows land. When he hit the baby I felt its pain, its helplessness. I was three or four years old, at an age where most autistic children, even the high-functioning ones, are regarded as having not yet developed a theory of mind. And yet I immediately identified with the pain and distress of being the object of violence, while around me the NT children wept with laughter.

I still cannot work out how Punch and Judy shows were ever considered funny. Most have now been altered, to reflect our ‘modern’ sensibilities – which means in effect that the horrifying portrayal of what is essentially domestic violence has been removed. But how could any adult view the beating of a baby with a large wooden stick as remotely amusing? How could anyone in their right mind think this was appropriate entertainment for children?

And how could they treat the one child who saw this as unfettered, terrifying violence as inappropriate and oversensitive?

Oversensitive.

That was a word my parents used a lot about me, when they thought I wasn’t listening. Because they never asked how I actually saw the world, they never knew how from my perspective it was full of violence and fear. I knew how, as with Mr Punch, the violence came out of nowhere, was disproportionate and unstoppable.

I didn’t want to hurt anything, ever. My theory of mind ran out of control. Everything had an independent existence; a picture of a cat could feel pain when torn just as a real cat felt pain. The knives and forks in the drawer got upset and hurt if they were put in the wrong places. Books felt abandoned if I forgot them. Every object in my world had feelings, and it was overwhelming. But no one else seemed to feel like this, and I quickly learnt that to mention it was childish, inappropriate.

Now, of course, I have it (mostly) under control. And as I write that sentence I realise that by control, I mean ‘still feel it but stop myself from exhibiting the distress that NTs find unacceptable’. When I break a mug (as I did last month) I want to cry for its pain and my loss, but I don’t. I still struggle at throwing away pictures of animals – I know they’re not ‘real’, my logical mind understands that, but I feel sick doing it. I wonder, sometimes, if this is the foundation of hoarding. NTs wouldn’t even begin to comprehend this kind of attachment, of distress, and explaining it to them is likely to invite laughter, disdain or dismissal. It’s not part of their understanding, so it’s not important.

This kind of distress also prompts withdrawal. The easiest way to reduce the pain you cause to inanimate objects around you is to control your environment such that things can rarely be damaged or destroyed. You can’t share your life with an NT, because they are likely to find you ridiculous, and to embark on horrible plans to force you to confront your stupidity in order to cure you of it.

I suspect that the only way to cure me of this would be to crush all compassion and empathy permanently. And then you can point and say ‘Look! she has no empathy! She must be a real autistic!”

Edit: This is a great post about identifying with the trauma of broken things: http://www.kitaiskasandwich.com/2011/03/13/putting-the-pieces-together/

About the Author: Fiona Wallace is a writer and artist on the autism spectrum. This piece first appeared on her blog, Lyssa and Me, and is reprinted here by permission.

Share

Too Loud

by Pia

This is new for J-man.

And if you were just observing this behavior in isolation, you might think that he is having a sensory reaction to the volume of the movie.  He has done this “hands-over-ears-too-loud-too-loud” behavior again and again over the past several weeks to different movies and at different times.  He can be perfectly happy and content with the volume at one moment and suddenly “too-loud-too-loud.” So is this some kind of new hypersenstivity to sound?

I don’t think so.  And here is why…

In this particular clip, we are watching Cars 2.  Mater, the best friend to Lighting McQueen, is on the phone with one of his competitors arguing about how great Lighting McQueen is.  Eventually, McQueen gets on the phone and has a little verbal sparring with the other car.  It is a low key, kinda cute exchange.

J-man also does “too-loud-too-loud” to the Lion King.  It is always at the same scene…. no, not one of the many scary-ish battle scenes.  He does “too-loud” when Mufasa lectures Simba about being responsible.  He does “too loud” to the movie Cats and Dogs when the evil white Cat is about to get a bath from the maid.  And he does “too loud” to Happy Feet when Mumble is being lectured by his dad.  And when Lilo’s sister yells at her in Lilo and Stitch.

I don’t think this is about volume, do you?

There is a lot of controversy about whether or not people on the spectrum are senstive to emotions of others and exhibit empathy.  It is a topic that generates a lot of discussion.  Well, my 4 year old ASD boy covers his ears and is upset when the (negative) emotional content of a movie becomes too much. What do you think that means?

About the Author: Pia is the mother of J-man, a boy on the autism spectrum. She describes herself as “a fierce protector, fiery advocate, and in desperate need of a nap.” She has a PhD in Developmental Psychology and works as a NICU nurse. This piece fist appeared on her blog, The Crack and the Light, is reprinted here by permission.

Share

The Empathy Issue is a Human Rights Issue

by Rachel Cohen-Rottenberg

Empathy. For most people, the word is synonymous with humanity.

The American Psychological Association calls empathy “the trait that makes us human.” 1 According to author D.H. Pink, empathy is “a universal language that connects us beyond country or culture. Empathy makes us human. Empathy brings joy…. Empathy is an essential part of living a life of meaning.” 2

In the popular mind, in scientific journals, and in autism-related books and websites, the canard that autistic people innately lack empathy (or have deeply impaired empathy) continues to hold sway. Of the innumerable reiterations of this trope, a few representative instances will have to suffice:

According to Vilayanur S. Ramachandran and Lindsay M. Oberman, “[T]he chief diagnostic signs of autism are social isolation, lack of eye contact, poor language capacity and absence of empathy…” 3

In his latest book, Simon Baron-Cohen writes that autistic people have “abnormalities in the empathy circuit in their brains” resulting in “zero degrees of empathy.” 4

And in a truly shameless display, physician Roy Q. Sanders, Medical Director of the Marcus Autism Center in Atlanta, GA suggests that “teaching empathy to someone with autism/Asperger’s is almost like teaching a pig to sing — it is a waste of time and annoys the pig (at least most of the time).” 5

I could adduce an abundance of further examples, but these assaults on our humanity are almost too much to bear.

In late June of last year, I began publishing posts and links on the website Autism and Empathy: Dispelling Myths and Breaking Stereotypes. In order to find material, I’ve been searching online using the terms autism and empathy. The results are often excruciating, especially when they consist of choice words like the following:

“It’s as if they do not understand or are missing a core aspect of what it is to be human; to be and do like others and absorb their values,” says psychologist Bryna Siegel, director of the Autism Clinic, University of California, San Francisco. “Their worlds are more barren, their social world is very distorted, and they come out of their world not when you want them to, but when they want to.” 6

Such statements tend to flow rather freely in the autism world, and when I read them, I always find myself wondering why some professionals do not come out of their world and into the world in which we live.

Much formal research employs similarly dehumanizing imagery, albeit in rather colder, more clinical language — language that betrays a propensity to see the world in vitro rather than in vivo:

“Contrary to some previous accounts, both apes and some children with autism do appear to understand actions as goal directed if not fully intentional; that is, they
understand that others have goals, persist toward them, and perceptually monitor the process. This means that both of them show some skills of social learning, though not as powerful or pervasive as those of human 1- and 2-year-olds. However, neither apes nor children with autism follow the typical human developmental pathway of social engagement with other persons… In general, it seems that neither apes nor children with autism have — at least not to the same extent as typically developing human children — the motivation or capacity to share things psychologically with others.” 7

Placing apes and children with autism in the same category, in contradistinction to “human 1- and 2-year-olds,” generates nary a whisper of protest or the slightest expression of disgust from the research community — with the sterling exception of Morton Ann Gernsbacher, whose brilliant piece On Not Being Human speaks eloquently to the issue:

“Sixteenth-century theologians, Victorian anthropologists, and 20th-century Nazis are not the only ones who have deemed various groups of humans ape-like or nonhuman; some current-day American psychological scientists are just as guilty of this crime… [I]n a recent New York Times “notable book of the year,” an internationally acclaimed psychological scientist segregated autistic people from other humans and placed them ‘together with robots and chimpanzees.’” 8

Can you imagine the outcry from within the scientific community — and from the general public — if any researcher attempted to place African-Americans and apes in the same category?

Where is the outcry on our behalf?

I continue to wade through the debris, searching for the gems that describe us in the full light of our humanity. I find those gems in abundance, but the search is still a difficult undertaking. I sometimes feel as though I am facing down a never-ending procession of men and women, armed with prestigious titles and advanced degrees, all asking the same question: “Are autistic people truly human?”

After all, if empathy is synonymous with humanity, then spending millions of dollars and entire careers researching the question of whether autistic people have empathy is nothing more than a thinly veiled attempt to address the question of whether we are human at all.

In August, I was posting links to research when I felt an overwhelming sadness. Why should we need to adduce evidence to prove our humanity? I thought. Why is it simply not a given?

And so I must ask outright: Why is the question of our humanity the fodder for so much scientific endeavor? And why has the very act of posing that question not caused a storm of protest in defense of our human rights?

In a few weeks, I will return to graduate school to pursue a second master’s degree. For some time now, I’ve intended to make a critique of the research on autism and  empathy my area of study.

Truth be told, the prospect of spending three years reading about our allegedly deficient humanity fills me with apprehension. But in the service of the greater good, I am willing to address the issue. I am willing to engage in the tedious process of revealing the potential biases of the test instruments. I am willing to critique the conclusions drawn from studies — studies, I might add, that measure such things as how often autistic children anthropomorphize abstract objects moving across a computer screen, or whether autistic adults respond “appropriately” to a series of exaggerated facial expressions outside of any meaningful context. I am even prepared to argue the wisdom of attempting to measure the complex spiritual, emotional, psychological, and physical experience of empathy with recourse to questionnaires and brain scans.

But I am also beginning to rethink the entire project. After all, doesn’t approaching the issue from the standpoint of scientific critique give credence to the idea that science should engage the issue of our humanity as a subject of study?

I know that it’s difficult for non-autistic people to understand us. I know that, in general, it’s difficult to understand anyone across the divide of difference. But isn’t that the divide that empathy must bridge?

Where is the empathy that should restrain psychologists from creating dehumanizing caricatures and engaging in stark generalizations?

Where is the empathy that should engender humility about the things that science cannot touch?

Where is the empathy that should cause professionals and laypeople alike to respond with outrage against the dehumanization of autistic people, to protest the injustices done, and to cry out in the face of the devastating impact of these injustices on our hearts and on our minds?

In this day and age, if mainstream researchers engaged in studies purporting to prove that gay and lesbian people are incapable of love, that African-Americans lack intelligence, or that Jews are especially good with money, the outcry from both the scientific community and the general public would be loud and long. The prejudices that such research lays bare would be met with outrage.

I’m still waiting for our day.

© 2011 by Rachel Cohen-Rottenberg

Sources

1 Defining the trait that makes us human. APA Monitor, 28(11), 1, 15. Bailey, S. (1994)

2 Pink, D. H. A Whole New Mind: Why Right-Brainers Will Rule the World (2nd ed.). New York: Penguin Group, 2006.

3 Ramachandran, Vilayanur S. and Oberman, Lindsay M. Broken Mirrors: A Theory of Autism. Scientific American. October 16, 2006.

4 Baron-Cohen, Simon. The Science of Evil: On Empathy and the Origins of Cruelty. New York: Basic Books, 2011.

5 Sanders, Roy Q. Experts Reflect on Parenthood Finale. Accessed September 4, 2011.

6 Stars ‘CAN-do’ about defeating autism. April 10, 2002. Accessed September 4, 2011.

7 Tomasello, Michael; Carpenter, Malinda; Call, Josep; Behne, Tanya; Moll, Henrike. Understanding and sharing intentions: The origins of cultural cognition. Behavioral and Brain Sciences (2005) 28, 000–000.

8 Gernsbacher, Morton Ann. On Not Being Human. Association for Psychological Science (February 2007), Volume 20, No. 2. The “internationally acclaimed psychological scientist” is Steven Pinker, who wrote in The Blank Slate: The Modern Denial of Human Nature (New York: Viking, 2002), “Together with robots and chimpanzees, people with autism remind us that cultural learning is possible only because neurologically normal people have innate equipment to accomplish it.”

About the Author: Rachel Cohen-Rottenberg is a wife, mother, writer, and artist. She was diagnosed with Asperger’s Syndrome at the age of 50. This piece first appeared on her blog, Journeys with Autism.

Share

If You’ve Met One Autistic Person, Then You’ve Met One Autistic Person

by Jillsmo

When discussing autistic people, “professionals” often say that a common trait is a lack of empathy. I have always held the belief that this is complete horseshit and that my child with autism has more empathy than your average typical adult. I know this, because I know my kid, but others might not notice it because he’s bad at verbally communicating his feelings: a much more common trait among autistic people. A typical person expects a certain emotional reaction to specific circumstances and, when they don’t get that from the autistic person, they will assume that it’s because that person lacks empathy, when the truth is that they’re just bad at telling or showing you how they’re feeling.

I’ve talked before about how Child 2 is the best possible “social skills” teacher for Child 1, and everyday I see Child 1 becoming more and more verbal about his feelings and opinions. Have I mentioned that’s awesome? Because that’s awesome.

Last night Child 2 was having a hissy fit about something or other, I don’t even remember what it was about, does it matter? He’s very dramatic. And loud. Did I mention loud? Because he’s loud. At the time Child 1 was in his room on his computer, an activity that they often share, usually against Child 1’s objections. As Child 2 is crying and carrying on, I hear Child 1 yell to him from the other room “HEY! CHILD 2! COME HERE AND LOOK AT THIS!”

Child 2 continues to cry and whine, and so Child 1 tries again: “CHILD 2! COME HERE AND CHECK THIS OUT! IT’S REALLY COOL!” This gets his attention, and Child 2 stops his tantrum and goes into the room to see what’s going on. Within seconds they are both laughing at whatever it is they’re looking at on the screen.

That has never happened before; Child 1 has never invited Child 2 to come and share his personal space. Usually what happens is that I’ll hear “MAMA! Make Child 2 leave me alone,” and I did hear that about 5 minutes later, but not before the tantrum was ended and Child 2 was laughing and feeling better. Child 1 intentionally went outside his comfort zone in order to make his brother feel better, if even just for a minute or two.

Lack of empathy, huh? I don’t think so….

About the Author: Jillsmo is the mother of two sons, one of whom has a diagnosis of autistic disorder. This piece first appeared on her blog, Yeah. Good Times., and is reprinted here by permission.

Share

Going Beyond Stereotypes

by beatrice_otter

One of the worst, most damaging, most incredibly false stereotypes of people on the autism spectrum is that they lack empathy. This is absolutely untrue in the sense that most people mean it; most people on the spectrum are at least as empathetic as neurotypical people, if not more so. We just don’t know how to express it in ways that most people understand. Scientists measure our ability to manifest emotion in socially appropriate ways and, even knowing that difficulties in learning social cues is one of the major signs of the disorder, assume that a lack of social cues implies a lack of emotion. And then to add insult to injury, scientists dismiss out of hand the testimony and critique of people who actually have an autism spectrum disorder.  Rachel Cohen-Rottenberg does an excellent job of refuting the stereotype and explaining her own empathy/emotional responses as a person with Autism.  I highly recommend it: go read!

Journeys with Autism: On the Matter of Empathy

My own experience is similar.  I am highly empathetic.  Part of my job is to visit people who are ill or injured.  Obviously, you have to connect with them, but my supervisor says I get too emotionally affected by/invested in them.

This is true in other places in my life, too.  For example, I don’t enjoy watching comedies, because I empathize too much with the characters.  I can’t separate myself from them, gain emotional distance.  So much comedy is based on uncomfortable or embarrassing things happening to a character and the audience being expected to laugh at it.  I can’t; I feel as if I were the person in that predicament.  It’s not funny to me, because I empathize too much with the characters.

But expressing that empathy has always been a problem for me, although not so much any more.  My natural body language doesn’t express my emotions in ways people not on the spectrum might expect.  For example, you know how teenagers are so emotional?  The world’s horrible one day, their life is ending, and the next life is awesome?  Yeah, that happened to me, but when I was having horrible days no one noticed, and on days when everything was fine, I occasionally had teachers coming up to me to ask me what was wrong.  My physical and facial responses to emotion didn’t match what they were looking for.  This is a problem when it comes to showing empathy: people don’t always (often don’t, actually) notice the things people on the spectrum do to show empathy, so they assume they don’t feel it.

I remember one incident in particular in high school where a friend of mine was going through a bad breakup, had problems at home, and one day it all came out as we were eating lunch together in the cafeteria.  She was crying, sobbing her eyes out.  I felt so bad for her, I felt her pain.  What did I do?  I sat there eating my french fries for a few minutes while I tried to figure out how to comfort her in a way that she would understand, how to express my emotional response to her pain in a way that would support her.  It took me a few minutes to figure out that what I needed to do was get out of my chair, walk around the table, and give her a hug.  From the outside, I’m sure it looked like I was completely heartless: there my friend was, right across from me, crying her eyes out, and I sat eating french fries.  But it wasn’t that I didn’t empathize with her. The problem was simply that I didn’t know how to express that empathy.

In the years since high school, I’ve learned to read social cues a lot better.  And I’ve learned to project body language, facial expressions, and tone of voice that match my emotional state and are socially appropriate.  Those are skills I can learn.  I didn’t have to learn the emotions. Those have always been a part of me.

And people buy into the stereotype, and assume I’m cold and unfeeling.

About the Author: A self-described “grammar geek,” beatrice_otter is a fiction writer on the autism spectrum. This piece first appeared on her blog, Otter’s Rock, and is reprinted here by permission.

Share

How Much Empathy?

by Spunkykitty

How much empathy is empathy? How much tact is tact? How much right is right, and how much wrong is wrong?

Is the social conundrum for people with Asperger’s really all that complicated because of our own inability to interpret and react to signals? And why is it assumed that the “other” is always a psychologically well-balanced person, free of neurological features that may also contribute to the difficulty in communication and reciprocal relation?

How does an Aspie communicate “rightly” with someone with PTSD issues? Bipolar issues? How about those who are in a state of clinical depression but do not openly admit it?

Have all those studies and experiments in this area of research ever taken into account the psychological profile and disposition of the “other” group? Or have they merely taken into consideration those with Asperger’s and just assumed the psychological “normality” (if there even is such a thing at all?) of the “other” (control group)?

And why this rant? I am no neurologist or psychologist. I am just a hypersensitive, hyper acutely aware Aspie with a slightly higher ability to logicise and verbalise my thoughts. I am trapped inside a maze of interlocking conundrums of the human psyche and processes of relating. And I’m wondering endlessly how to get out of this horrible nightmare of never-ending relational complications, the cause of which I just cannot comprehend. Available research does not provide any helpful resolution. It mostly serves to indicate, through a plethora of findings about what we “lack,” that the Autistic person is somehow or other “wrong,” and it is our fault when relations or communications fail.

Each time a discombobulating event occurs in the area of relating, I am set off on a roller coaster of emotional angst and intellectual processing, wondering over and over, examining the logical facts, trying to figure out whatever it was that went wrong. And nobody will explain it to me. I suspect that nobody understands themselves even half as much as some of us Aspies understand ourselves. Why? Because some of the “others” are not involved in an endless process of trying to figure out how and why there is so much “wrong” about their psyches.

This leads me to surmise logically, and concur with many other Aspies who muse upon this same tired, worn-out subject, that in practical reality, we are far more empathic, logical, in touch with self and reality, and hence far more emotionally and mentally “balanced” than the “others.”

Why is there no research being done from this angle? Is it because most of the research is being done by persons without much understanding of themselves, and who would never stop to engage in introspection upon this issue anyway?

I am reminded of a quote attributed to Jesus in Matthew 7:4: “How can you say to your brother, let me take the speck out of your eye, when all the time there is a plank in your own eye?” There are many variations of this question in different philosophical, religious, and literary writings, but these remain the voices in the wilderness as far as the majority of humanity is concerned.

About the Author: Spunkykitty is an artist with Asperger’s Syndrome. This piece first appeared on her blog, Spunkykitty: My Wonderful World, and is reprinted here by permission.

Share

Perspectives on Friendship and Other-Ability: Country Mouse and City Mouse

by Leah Kelley

I have been considering the way in which my son, H the Country Mouse, relates to his friend, City Mouse. They have known each other for almost seven years… since they were both diagnosed with ASD. They are true friends. When they are together… there is no social deficit. There is no discernible difficulty in turn-taking in conversation, or interest in each other. They ‘get‘ the social pragmatics. They give each other the wait time needed to process. They are not judgmental of each others’ shortcomings and have few social expectations, and they share a myriad of common interests. Their disability is only other-ability and they share it, embrace it, and are emotionally refueled by it.

As parents of these boys, our families have become very close. It is amazing to spend time with other adults who “get” our kid and see him for his strengths. Even more… it is like the relief of a sigh…. only more so… to spend time with adults when I do not have to explain a thing or worry about their perceptions or judgment. The experience for me is anxiety free, and feeling truly understood revives me and gives me courage and strength. It is valuable for both Craig and I to know that others are on the same road and sharing our journey.

The experience of the connection between our Country Mouse/City Mouse families influences my practice as well. I have an awareness of the struggles that other families face in supporting their children and I have experienced the powerful effect of acceptance and a nonjudgmental stance.

I try to convey this level acceptance and empathy to the families with whom I work, and I  sense that it comes as a relief for them. There is the relief that they are not being judged, and this often has families sharing more that they might otherwise have done. There is also the relief that they are not alone, which has been expressed repeatedly to me, and this lessens the sense of isolation, fear, and loneliness that is so often experienced by parents of children with disabilities.

I am so grateful to our City Mouse friends and their amazing boy. I love to see our boys together and I am quite happy to make the lengthy journey into the Big City so that we can connect.

A while back City Mouse gave H a StarWars Pez dispenser. It just so happened that H already had this one, and he disclosed this, but then they discussed how he might save it, unopened, until they were in university together and then they would sell it on e-bay. They discussed how they would spend their anticipated future windfall. Hilarious – charming – and there is a certainty of a future to their friendship that brings me hope and joy.

The freedom and joy of this relationship for our boys is even more intense.

It has me wishing that more of us could pace ourselves with such ease to the place and space of others.

… and sometimes, too, it has me wondering if it is perhaps the rest of us who might be lacking in social skills and sensitivity.

About the Author: Leah Kelley is a K–12 Special Needs Resource Teacher, a parent of a child with ASD, and an experienced primary teacher. She completed her Master’s Degree in Education at Simon Fraser University, focusing on supporting educators in understanding the experience of students with autism. This piece first appeared on her blog, Thirty Days of Autism, and is reprinted here by permission.

Share