The Empathy Issue is a Human Rights Issue

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.

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6 Responses to “The Empathy Issue is a Human Rights Issue”

  1. Angel says:

    Good read. As the parent of two high functioning autistic children and two neurotypical children I know I get very frustrated at times with the apparent lack of empathy (especially in my oldest – our youngest is only five and has a twin who helps her a lot – but our oldest is – well – our oldest). My husband always reminds me, “You know he has empathy – he just doesn’t show it they way you expect.” From the outside Gabe comes across as an un-caring person – but when you know him you see just how much he is bothered by homeless animals and hungry children (and homeless people and hungry animals). Personally, I believe Gabe has empathy – it is just different than ours and he shows it in a very different way than we do.

  2. When a doctor can’t figure out what is wrong with a person,it’s all in their heads. Like my father-in-law who died of aortic cancer.

    I see the same ignorance in autistic “experts”. They’re very good at pointing out what is missing, even demonizing people…but I’ve never see any attempt to see it through the eyes of autistics.

    I would never blame you if you gave it up.

    I bet you feel like David versus Goliath, and it’s got to be disheartening to think of giving your life to something with no assurance of even making a dent in their defenses.

    I used to love science. But this stuff is ugly.

  3. Ben S says:

    I hope your vacation to visit Ash charges your batteries somewhat. This post has to be saved for those times when I feel I need to confront people about the horrible things I hear them say about people like me.
    The response is usually disbelief that someone who can speak and (sometimes) make eye contact could ever be like the people they refer to as ‘retards’. It hurts.

  4. AnnaBWell says:

    Someday the myths, lies, bias and prejudices about what it is to be autistic will mostly end. We will all be thankful that you were willing to look into the mire and the slime (of so-called scientific studies of autism); and report back to us what you found there. I don’t know where your road is taking you, but I THANK YOU for being a scout in that incongruous territory of “psychological science.” I am autistic, and what “they” say about us is just simply bunk.

  5. Ettina says:

    I’d say that any time we refer to a trait that not all humans share as ‘part of being human’, we are encouraging discrimination.

    I even consider psychopaths (who actually do lack empathy) to be fully human. And to pretend they are not can be very harmful. For example, we can now identify psychopathy in children as young as 3 or 4. The thought of someone seeing their preschooler as not being fully human is quite alarming. (Especially since some people think that the best way to treat psychopathy in a young child is to focus on forming as strong a parent-child bond as is possible.)

    So while I do want people to know that autistics don’t lack empathy, I don’t want to treat empathy as a prerequisite to being a person.

  6. Carol says:

    As the mother of a 15 year old with an Asperger’s label, I was shocked by some of these comments. It’s true that he has said things that hurt our feelings or make those who don’t know him think he is unkind, but that is a communication problem, not one of empathy. I’ve seen him become deeply emotional over an injured animal, and give up his favorite sensory-safe spot for an ill sibling. True, we had to spell out for him what she was feeling, as he didn’t guess this based on her stated illness, but that is lack of experience or knowledge, not empathy. When you know better, you do better…and he knows more with every passing month.

    Besides, as you said, even if autistics did all “lack empathy”, that would be no justification for the language you quoted. (And I won’t even go into the “disease” based language of the “CAN” article – yikes!)