by Rachel Cohen-Rottenberg
When engaging the question of whether autistic people experience empathy, one finds a very wide gap between the conclusions of the most widely accepted research studies and the lived experiences of people with autism. On the one hand, the research with the widest currency for the past 25 years, both in academic circles and in popular culture, has resulted in the conclusion that autistic people lack empathy; on the other hand, the words of autistic people, and the observations of those who live and work closely with them, often reflect an overwhelming level of empathic response. What accounts for this disjunction? A preliminary review of the literature shows that both methodological issues and limiting biases are in play. From a methodological standpoint, the quantitative studies that underlie the theory of autism as an empathy disorder are rife with the problems common to all quantitative research: they generalize about millions of people based on small sample sizes; they refer to people in the aggregate as the statistical mean of their attributes, rather than as individuals; they use pre-determined tests and questionnaires that do not take into account the perspectives of the research subjects; and they generalize about complex human experiences in simple terms. While a number of studies have pointed to factors other than a failure of empathic response that account for poor autistic performance on conventional test instruments, and while new research demonstrates direct evidence of the intensity of autistic perceptual, cognitive, and emotional awareness, the characterization of autistic people as lacking in empathy still holds tremendous sway in both the research community and the popular mind. As such, the nature of the current science calls out for a detailed critique of its methodologies ― one that moves the conversation past the pretense of objectivity into an analysis of the biases, core assumptions, and power relations embedded in the research. The construction of a new paradigm for analysis, informed by such critical social theory as Normal Theory and feminist epistemology, has the potential for framing a rigorous critique of the social, cultural, and ability-based assumptions on which mainstream autism research is based.
The theory that autistic people are defined by a lack of empathy has its origins in a 1985 study by Simon Baron-Cohen and his colleagues at the Autism Research Centre at Cambridge University. When these researchers began their work, they described empathy in terms of being able to mentalize — to discern that other people have thoughts and feelings different from one’s own — an ability known as having a theory of mind. They then set out to answer the question of whether autistic people have this capacity (Baron-Cohen et al. 1985). To do so, they verbally administered a false-belief test to 20 autistic children. As is the goal of all false-belief tests, this one sought to answer the question of whether the respondents could differentiate between their own knowledge about a situation and the false belief of someone else. The researchers used two dolls, Sally and Anne, to act out a scenario in which Sally put a marble in her basket and left the room, and then Anne took the marble out of Sally’s basket and put it in a box. Baron-Cohen’s team asked the children where Sally would look for the marble when she returned. Sixteen of the twenty autistic children answered that Sally would look in the box (where they themselves knew the marble to be), rather than in the basket, where Sally believed the marble to be. Based on the performance of these children, the researchers drew the conclusion that autistic people cannot understand the mental states of others, cannot figuratively put themselves into the shoes of others, and therefore lack the ability to empathize.
While the 1985 study has greatly influenced the conversation about autism, it suffers from the same flaws as the studies that followed: it uses small sample sizes, and it hides variations in ability by describing autistic people in the aggregate. Because the original study was based on a small sample of only 20 autistic children — four of whom passed the test — the conclusion that autism is defined by an impairment in theory of mind is highly questionable; later studies in support of this thesis relied on similarly small groups of test subjects and failed to show universal deficits. A 1989 follow-up study with only ten autistic children showed 10% of them passing a more advanced false-belief test, while a later study of only 16 autistic adults showed them scoring, on average, lower than controls (Baron-Cohen 1989; Baron-Cohen et al. 1997). From these studies, researchers took the leap to characterizing all autistic people as lacking a theory of mind; in fact, they developed the Theory of Mind hypothesis of autism as a unitary theory that explained the source of all autistic traits. When the author of this literature review questioned Baron-Cohen’s generalizations based on these studies and others like them, he provided a graph showing that he was not speaking about individuals, but about autistic people being, on average, to the left of the bell curve (Autism Blogs Directory 2011). His response begs the question of how autism can be defined as an empathy disorder when the aggregated data fails to show universal deficits and ignores individual variation (Gernsbacher 2005).
The quantitative approach used by Baron-Cohen and his colleagues not only generalizes from small samples and masks variation by means of statistical averaging, but also reduces complex human experience into simple categories; the result is that Baron-Cohen’s theories have become more and more essentializing and reductive. For example, beginning in 2002, Baron-Cohen began modifying his work to include a conceptualization of autism as a disorder marked by an excessively “masculine” cognitive style. In using the term “masculine,” he was not referring to a complex cultural and historical construct, but to what he believed simply to be a biologically inherent attribute. Such views were first expressed in his paper on the Extreme-Male-Brain Theory, in which he described systemizing as a biologically based male trait and empathizing as a biologically based female trait, further asserting that because autistic people are good systemizers, they have an “extreme male brain.” (Baron-Cohen 2002) These views find their most expansive rendering in his Empathizing-Systemizing (E-S) Theory, in which he drastically reduces the complex interplay of systemizing and empathizing into polar opposites on a simple, flat linear continuum, with autistic people at the zero end of the empathy scale (Baron-Cohen, 2009, 2011). In support of these rather problematic theories, one finds Baron-Cohen and his team crafting a number of quantitative tests, including the Systemizing Quotient (SQ) test (Baron-Cohen et al. 2003) and the Empathy Quotient (EQ) test (Baron-Cohen and Wheelwright 2004); carrying out studies that purport to show a direct correlation between testosterone and autistic traits, including a presumed lack of empathy (Chapman et al. 2006; Knickmeyer et al. 2006; Bara et al. 2010; Chura et al. 2010; Auyeung et al. 2010, 2011; Van Honk et al. 2011); and performing brain imaging studies that test empathy, mainly by privileging visual processing (Baron-Cohen 2011). The results of every test are interpreted as reflective of a lack of empathy in autistic people, with no suggestion that because the studies are based on straightforward biological determinism and ignore the complex internal experiences of the research participants, the conclusions might be flawed.
In privileging biology over the nature of his subjects’ lived experiences, Baron-Cohen ignores other explanations as to why autistic respondents might score poorly on his tests. In so doing, he breaks a key rule in scientific inquiry: It is not enough to determine whether a theory can be proven true. One must demonstrate that it cannot be proven false (Creswell 2009). Other researchers, however, have been more thorough in seeking evidence for other reasons why autistic people might score below controls on quantitative tests of empathic ability, with most of their studies centering on tests of false belief. These studies have pointed to a number of challenges associated with autism, including real-time information-processing difficulties that show up in the more advanced false-belief tests (Tager-Flusberg and Sullivan 1994) and the ways in which the extreme fear engendered in autistic children outside their familiar environments adversely affects attention and communication, as reflected in the words of an autistic respondent who answered the question “Do you think you would mind if somebody entered the room?’’ by replying, ‘‘Yes, we always live in fear.’’ (Bara et al. 2001) In and of themselves, these elements of autism would explain an inability to follow the scenarios being presented in Baron-Cohen’s tests and thus, an inability to provide the expected answers.
While information-processing difficulties and high levels of anxiety provide sufficient reason to question the conclusions about theory of mind drawn from false-belief tests, additional evidence abounds for why autistic people score lower than controls on these tests. Some of the most compelling evidence comes from researchers who point out that impairments in both receptive and expressive language are core to autism, and that these impairments make understanding verbal instructions and providing verbal answers on false-belief tests extremely difficult (Gernsbacher and Frymiare 2005). To test the notion that giving a verbal assessment to a child with language impairments unfairly skews the results, one researcher gave autistic and deaf children a visual, nonverbal test of false belief, and found that not only did both sets of children show intact theory of mind, but they also outscored non-autistic and hearing children taking the same test (Peterson 2002). Other researchers have shown that autistic children’s scores on theory of mind tests improve as their expressive and receptive language skills improve (Steele et al. 2003). In fact, much of the problem attending false-belief tests may derive from the grammatical construction used in them, the sentential complement; according to Gernsbacher, this construction “is one of the most complex in the English language” (Gernsbacher 2005). When it comes to performance on false-belief tests, the importance of understanding a sentential complement cannot be overstated. In a sentence that uses this construction, the main clause is true, but the subordinate clause might be true or false. An example is the sentence “John thinks that Sarah is in the library”; while it is true that John thinks that Sarah is in the library, whether Sarah is actually in the library is another matter. Thus, the sentential complement provides a way for one to think about the difference between another person’s belief and what is actually happening ― exactly the capacity being tested on false-belief tests (Hale and Tager-Flusberg 2001). Having a grasp of sentential complements gives one the tools with which to think about the contents of other people’s minds ― tools not available to children with language impairments.
The mounting evidence against the characterization of autism as an empathy disorder does not stop at critiques of false-belief tests, but also consists of studies that demonstrate, in contradistinction to Baron-Cohen’s theories, that autism is a condition defined by an overabundance of perceptual, cognitive, and emotional awareness. For example, a 2005 study showed that, for autistic respondents, the amygdala ― the portion of the brain responsible for processing emotions ― was overactive when they gazed at faces, an indication of a higher than average emotional response (Dalton et al. 2005); a 2006 study described autistic experience as one of “enhanced perceptual functioning” (Mottron et al. 2006); and in a 2007 study, the authors coined the phrase “Intense World Syndrome” to describe autistic perception, and concluded that rather than having a deficit in awareness and response, autistic people find the world so laden with sensory and emotional information that they withdraw from social interaction (Markram et al. 2007). The same year, another study found that while the autistic respondents scored lower than their non-autistic counterparts on tests of cognitive empathy (the ability to determine mental states from nonverbal cues), they scored equal to or higher than their non-autistic peers on measures of emotional empathy (having an affective response to the feelings of others). In 2009, independent theoretician Adam Smith followed up on this research by developing his “Empathy Imbalance Hypothesis of Autism,” positing that autism is characterized by low cognitive empathy but very high emotional empathy (Smith 2009), and in 2010, autism researcher Bird and his team found that empathy does not inversely correlate with autistic traits, but is associated with high levels of alexithymia, an inability to verbalize emotion (Bird et al. 2010). All of these studies shine a light on the complex nature of autistic empathic and sensory experience.
And yet, for all of its potential to change hearts and minds, the new research has not managed to dislodge the influence of the work that continues to make autism synonymous with a lack of empathy. The Theory of Mind and Empathizing-Systemizing theories of autism still cast a long shadow, as evidenced by the dehumanizing tropes employed by researchers in the literature and by professionals in the popular press. Because empathy has become synonymous with humanity both in the research and in the popular mind, a purported autistic empathy deficit has become the basis for dehumanization. In the literature, one finds statements that autistic people are not fully human (Baron-Cohen 2001); that autistic children are like robots and chimpanzees (Pinker 2002, 62, cited in Gernsbacher 2007); that autistic people are inherently selfish and egocentric (Frith 2004); that autistic children are like apes (Tomasello et al. 2005, cited in Gernsbacher 2007); and that autistic people dehumanize others and can provide insight into why non-autistic people do the same (Haslam 2006). Moreover, in the press, autism professionals have made statements for popular consumption along similar lines: that autistic children are missing a core component of humanity (Siegel, cited in Falcon 2002); that people with autistic traits should not bear children (Siegel, cited in Buchen 2011); and that trying to teach a person with autism empathy is like trying to teach a pig to sing (Sanders 2011). With the sole exception of Gernsbacher, this rampant dehumanization generates nary a whisper of protest in the research community (Gernsbacher 2007). Moreover, the theory of autism as an empathy disorder informs proposals for highly questionable treatments, such as the use of MDMA (Ecstasy) to induce empathy in autistic people (Bedi 2011; Yazar-Klosinski 2011). Given the levels of dehumanization that have found currency in the research community and in the larger culture, and the dangerous treatments to which they can lead, the theories on which such distortions rest merit rigorous critique.
To carry out such a critique, one must begin by a) analyzing for possible bias all the methodologies on which the theories are based, and b) engaging in reflection upon the limitations of quantitative measures. One might start by critiquing such self-report questionnaires as the Social Reciprocity Scale (Constantino et al. 2000), the Autism Quotient (Baron-Cohen et al. 2001), the Systemizing Quotient (Baron-Cohen and Wheelwright 2003), the Friendship Questionnaire (Baron-Cohen and Wheelwright 2003), the Empathy Quotient (Baron-Cohen et al. 2004), and the Adult Asperger Assessment (Baron-Cohen et al. 2005). One might then move on to an analysis of all theory of mind tests, including Pretend, Desire, Perception/Knowledge, Location-Change False-Belief, Unexpected Contents False-Belief, Sticker Hiding, Second-Order False Belief, Lies and Jokes, Traits, and Moral Judgment (Steele et al. 2003), along with such tests of cognitive empathy as the Reading the Mind in the Eyes Test (Baron-Cohen et al. 1997) and the Triangles Test (Abell et al. 2000; Knickmeyer et al. 2006). In addition, pressing work needs to be done on whether pre-determined questionnaires, hormone studies, and brain imaging tests should inform conclusions about the consciousness of human beings; after all, we are not the sum of our test responses, hormones, or brain waves. While quantitative measures might be able to answer the question of “What is happening?” they cannot answer the question of “Why is it happening?” ― particularly with regard to the infinite complexity of human emotional response in social and cultural contexts permeated by inequities based on gender, race, ethnicity, class, sexual orientation, and disability.
The process of combining a critique of the test instruments with a consciousness of the limitations of quantitative methods holds great potential for finding bias that can skew the test results. To provide a brief example: A preliminary review of the questions on the EQ test reveals some basic social assumptions. All of the hypothetical situations described in the questions assume a group of non-autistic people, and all of the questions expect that everyone should be able to impute mental states by looking at the nonverbal cues of non-autistic people. When it comes to measuring empathy, this assumption is significantly troubling for two reasons: 1) It fails to address the issue of what happens to autistic and otherwise disabled people in “normal” social settings, and 2) it assumes that autistic people should be able to read the mental states of non-autistic people, but makes no such assumption in the other direction. These two aspects of the test questions have the potential to bias the results in the direction of concluding that able-bodied people have empathy simply because they understand other able-bodied people, leaving out the possibility that they may do very poorly understanding the mental states and experiences of disabled people.
The first statement on the EQ provides an example of this bias in favor of the able-bodied majority. The statement reads: “I can easily tell if someone else wants to enter a conversation.” Who exactly is “someone”? Disabled people often find themselves wanting to enter a conversation in a social setting, only to have able-bodied people exclude them and render them socially invisible (Murphy 1990). And yet, many able-bodied people would very likely answer “Strongly agree” to this question because, in most instances, such people actually do notice other people sufficiently to read their signals. Thus, all the response indicates is that people in the majority are attentive to other people in the majority; the pre-determined question fails to address a complex and pervasive social bias against disabled people that is based on anything but empathy. Moreover, like so many of the questions on the EQ, this question assumes that a failure of an autistic person to properly deduce the mental state of a non-autistic person is evidence of a lack of empathy, but it does not make the opposite assumption: that a failure of a non-autistic person to properly deduce the mental state of an autistic person is also evidence of a lack of empathy. And yet, it is a truth hidden in plain sight that most non-autistic people are unable to intuitively read the nonverbal language of autistics and deduce their mental states. If they could, there would be no need for over 25 years of research into how autistic people work.
Fortunately, some preliminary work in critiquing research bias has been done by scholars who have pointed out the social, cultural, and ability-based assumptions embedded in the literature. Akhtar and Gernsbacher note a Western cultural emphasis on visual processing in social cognition and understanding mental states (Akhtar and Gernsbacher 2007). Smukler points to a privileging of normalcy in the ways in which the literature locates failures in social communication exclusively in the autistic person, rather than in a communication breakdown between parties, as would be assumed for relationships between non-autistic people (Smukler 2005). Along similar lines, Gernsbacher suggests that a lack of social and emotional reciprocity is not an inherent feature of autism, but derives from the autistic experience of exclusion and disrespect at the hands of non-autistic children and adults (Gernsbacher 2006). And finally, with regard to the Extreme-Male-Brain Theory, Jack notes a mapping of culturally constructed gender roles onto biology (Jack 2011). These perspectives on different forms of bias can provide the impetus for a thoroughgoing analysis of the research and an unmasking of its claims to objectivity.
Such a critique of autism research necessitates a new paradigm informed by critical social theory and its analyses of power, privilege, and marginalization. One of the more promising new frameworks comes from the nascent field of Normal Theory, based in part on the work of Lennard Davis, a scholar who traces the notion of “normal” as a social construct created by nineteenth-century eugenicists. According to Davis’ research, the early statisticians were almost all eugenicists, and were the first to aggregate human attributes, place them on a bell curve, define a norm to which all people must aspire, and mark anyone outside the center of the bell curve as inherently deviant and dangerous (Davis 2010, 4-11). Disabled people thus became, in Longmore’s words, “the ultimate Other” (Longmore 2003, 207). In his discussion of Normal Theory, Smith picks up from Davis in asserting that the category of disability creates the associated category of normal, and that normalcy cannot exist without it (Smith 2004). Moreover, Smith notes, the category of disability renders normalcy both neutral and invisible, hiding relationships of power between those who occupy the center and those who have been marginalized as abnormal. Disabled people, Smith asserts, become represented as homogeneous parts of an aggregate whole, without individuality and without complexity (Smith 2004), an act that Minnich traces to a Western cultural predisposition to categorize people according to “kinds” as though such categorization is “natural” rather than a human choice (Minnich 2005, 25). Normal Theory, drawing on other critical social theory such as Critical Race Theory and Whiteness Theory, has the potential to reveal when science has moved from increasing the store of useful knowledge to reinforcing stereotype and marginalization.
Given its analysis of the privileging of normalcy, Normal Theory is especially well suited to a critique of autism research. After all, autism research is marked by many of the problems that Normal Theory illuminates: a pervasive need to pathologize autistic responses as a deviation from the norm; an insistence on placing test results on a bell curve and speaking of autistic people in the aggregate; a tendency to essentialize cultural norms in the brains and bodies of autistic people; and a refusal to render images of autistic people as diverse and complex individuals. Moreover, Normal Theory has the potential to incorporate the insights of disability theorist Tobin Siebers, whose elucidation of the cultural accusation that all disabled people are narcissists, along with the near-invisibility of the social and cultural agenda of the accusers, has particular resonance for autistic people living under the burden of the lack-of-empathy stereotype (Siebers 2003, 34-52). If, as Garland-Thomson writes, “the margins define the center” (Garland-Thomson 2002), Normal Theory can offer an analysis of who benefits from autism research on empathy: autistic people who are marginalized as lacking in the essentials of humanity, or autism researchers who, by pathologizing difference, reinforce the privilege that derives from their own constructed normalcy?
In exploring this question, one must acknowledge that the problems of marginalization and privilege are nowhere more apparent than in the almost complete absence of autistic voices and perspectives from the research. Apart from the work of Smukler (2005), Mottron et al. (2006), and Smith (2009), who incorporate autistic perspectives into their work, the voices of the very people about whom so many generalizations are constructed are almost silent in the research. In fact, only Mottron and Gernsbacher have co-authored papers with autistic researchers (Mottron et al. 2006; Dawson et al. 2007; Stevenson et al. 2011); nowhere else are autistic researchers to be found. With the advent of the Internet, however, the voices of autistic experience now have a public platform, resulting in testimonies about autism and empathy that are profoundly enlightening ― a fact that makes the absence of autistic voices from the research all the more troubling. Consider, for example, the way that Nikki, a woman with Asperger’s Syndrome, describes the depth of her empathic experience:
There have been a few times that I have witnessed a person being hurt, or an animal killed or injured. As it was happening, I merged with and absorbed all the shock and pain. As a young child, I would try to save all the flies that had been caught on the sticky fly tape trap; I couldn’t stand to hear their desperate buzzing as they slowly died… I cannot stand to see anyone hurt or humiliated in any way. I am disgusted by “jokes” at someone else’s expense; I hate ridicule and barely concealed spite disguised as “humor.” Many times I have been told I am too intense, that I need to lighten up, and that I can’t take a “joke.” (Autism and Empathy, 2011)
The nature of Nikki’s empathic awareness stands in sharp contrast to the conclusions of the Theory of Mind hypothesis and the Empathizing-Systemizing Theory. Other such narratives abound, as can be found in a discussion of autistic adults moderated by Savarese (Savarese 2010), in blogs by autistic people listed in the Autism Blogs Directory, and in work by autistic people on the Autism and Empathy site. But like Nikki’s voice, the voices of autistics have not found their way into most of the research.
In conjunction with Normal Theory, feminist epistemology can begin to address this absence by opening up four related issues: “epistemic privilege,” the question of who retains the power, prestige, and authority that result from being designated a knower; “epistemic authority,” the right to be respected as a knower; “epistemic injustice,” the silencing and dismissal of the voices of knowers; and “epistemic ignorance,” a lack of valid knowledge that results from epistemic injustice (Anderson 2011). Along these lines, Anderson’s discussion of the ways in which conventional knowledge practices disempower women (Anderson 2011) has great potential for illuminating the ways in which mainstream research disempowers autistic people. In fact, one could easily use Anderson’s analysis of the position of women in the production of knowledge to highlight the position of autistic people in autism research. One need only substitute “autistic people” for “women” and each part of her analysis applies: rather than being given epistemic privilege, autistic people are almost entirely excluded from the process of scientific inquiry; autistic people are not accorded epistemic authority, despite having first-hand knowledge of the subject matter; the cognitive style of autistic people is pathologized rather than respected; the resulting theories represent autistic people as inferior; the research hides, behind a mask of objectivity, the inequitable power relations between autistic people and other actors in society; and the research is complicit in the production of knowledge that reinforces social hierarchies of normal and abnormal. The result is that autistic testimony is judged unreliable, resulting in epistemic injustice, as evidenced by a study that dismisses autistic people as having “a peculiar lack of insight” (Frith 2004) and one in which autistic self-representation is given less credibility than the observations of third parties (Johnson 2009). From such epistemic injustice comes epistemic ignorance (Anderson 2011); with authority denied to knowers who are in the position to know, a large part of the evidence base is simply missing.
To heal this epistemic ignorance, autistic voices must be given epistemic privilege in the research. The lived experiences of autistic people provide a key test as to the external validity of theories developed in vitro rather than in vivo. At present, however, most of the mainstream research on autism and empathy suffers from the limitations of all quantitative research when faced with the complexity of human experience. While new research points to a high degree of autistic perceptual, cognitive, and emotional awareness, the characterization of autism as an empathy disorder still permeates discussions about the nature of autism and the treatment of autistic people. By shining the light of an analysis informed by critical social theory, scholars have a powerful means by which to critique the social and power relations on which present autism research is based. As a highly empathic and sensitive woman on the autism spectrum, and as a member of a community that includes countless people who experience the sensory and emotional worlds with a great deal of intensity, I hope that others will join me in a rigorous critique of the research.
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© 2012 by Rachel Cohen-Rottenberg