I am still working through my course on Autism Spectrum Disorder, and therefore am finding it hard to squeeze in time to write. However, my amazing husband is taking the course with me, and has agreed to let me share his research paper. I didn’t write the following, but am sharing it with his permission. It’s so good. All about empathy. Which of course, I am working on developing my understanding of as well. You can read my previous posts about empathy here, here, and here.
Misconceptions of Empathy in Autism
The term empathy was introduced to the English language in 1909 by Edward Titchener, who defined it as the ability “to project yourself into what you observe” (Baron-Cohen & Wheelwright, 2004, p. 163). The findings of psychologist Simon Baron-Cohen are often cited as evidence that autistic people have an underdeveloped sense of empathy and are therefore unable to understand and respond to the feelings of others (Russell-Smith, Bayliss, Maybery, & Tomkinson, 2013, p. 695; Smith, 2008, p. 273; Dziobek et al., 2008, pp. 464-465). This belief, however, does not give sufficient attention to first-hand accounts of autistics feeling empathy, differences in how they may express their feelings, and the lack of empathy that is sometimes shown to them. The Intense World Theory, which posits that the autistic people may sense and feel at a heightened level and may therefore be unable to respond in the manner expected by others (Markram & Markram, 2010, p. 22), may also account for part of the discrepancy between the stated experiences of autistic people and clinical observations. Inadequate attention among researchers to a broader view of empathy, coupled with this heightened sensory input, has created the misleading and harmful belief that autistics are cold, unfeeling individuals.
Baron-Cohen suggested in 1985 that autistic people lack a “theory of mind,” or ability to perceive the feelings and motivations of others (Baron-Cohen, Leslie, & Frith, 1985, p. 37). He based much of this idea on an experiment in which most children with autism were unable to determine the appropriate location for a doll to look for a marble in an observed scenario (Baron-Cohen, Leslie, & Frith, 1985, p. 42). He later collaborated with Sally Wheelwright (2004) for a study of empathy and autism. They had autistic individuals complete a questionnaire to assess their Empathy Quotient, which was then compared to a control group and found to be significantly lower (p. 168). Baron-Cohen and Wheelwright citing this as evidence of lower empathy in autistic people is problematic at a very basic level. Relying on self-reports to generate statistics, unaccompanied by any other method of observation, has proven to be unreliable (Donaldson & Grant-Vallone, 2002, p. 256). In addition, asking autistic people to respond to such a questionnaire is puzzling when considering Baron-Cohen’s earlier work on autism. In a 1985 paper, he stated that they have an impaired ability to “impute mental states to oneself and to others” (Baron-Cohen, Leslie, & Frith, 1985, p. 39). The inherent contradiction in stating that autistic people cannot understand themselves and then using their self-reports to prove their lack of empathy is enough to call the validity of the evidence into question.
Putting aside how people might rate themselves on a questionnaire, many autistic people, as well as the people close to them, state very directly that they feel very intense empathy and point to real-world examples as evidence. To find these first-hand accounts, one often has to rely on blog posts and personal websites, as autistic people are underrepresented among people who speak as experts on autism. Liane Carter (2013) discusses struggling with her son’s autism diagnosis; hearing her crying, her son recognized her sadness and gave her a hug. Many years later, he continues to recognize cues and respond in a comforting manner. Similarly, Cary Terra (2012) relates a story of an autistic client offering her reassurance after recognizing that she was feeling embarrassed. In describing his empathetic responses, Joel Smith, an autistic person, states, “it is overwhelming, threatening to wash my being away, when someone I care about is upset….I feel the pain very deeply” (Robertson, 2012, p. 187). Some autistics describe feeling empathy even toward inanimate objects. For example, Steve Slavin (2015) reports feeling sadness on behalf of possessions that are no longer noticed or used. Each of these examples shows that autistic people are able to pick up on verbal and nonverbal cues to understand an emotional state, which helps them internalize the feelings of others and often respond accordingly. These clear demonstrations of empathy are a much more valuable insight into the minds of autistic people han a problematic questionnaire or a test whose validity has been called into question for at least half a dozen potential flaws (Zurcher, 2012).
These deep feelings have been attributed by Drs. Kamila and Henry Markram (2010) to what they call the Intense World Theory. They suggested that the amygdala could function at a higher level in autistics, which may cause “emotionally relevant information” to be felt more intensely, leading to difficulty in responding to the situation and possible withdrawal (p. 3). This is in keeping with first-hand accounts of these people and those close to them, who state that empathy is often experienced at a level that is so powerful that it is debilitating. A theory that accounts for the reported experiences of autistic people, rather than dismissing anecdotal evidence, is a positive step toward giving these people more of a voice in developing an understanding of the condition. While the treatments recommended by the Markrams, such as “blocking memory formation” through pharmacological treatment and withholding stimuli from children (pp. 19-20), have the potential to be damaging to the child (Remington & Frith, 2014), the underlying ideas behind the theory may help explain the disconnect between the feelings of autistic people and how these feelings have been perceived by researchers like Baron-Cohen.
Anna Stubblefield (2012) suggests that the perceived lack of empathy in autistic people may be a learned behaviour. She states that they are frequently misunderstood by others, and that this misunderstanding leads to them being treated in a non-empathetic manner (p. 161). When autistics are told that their thoughts, feelings, and behaviour are incorrect and that they must assimilate to societal “norms” in order to be accepted, this demonstrates a lack of empathy on the part of the person criticizing the behaviour. Because the behaviour modeled for them is hurtful rather than empathetic, it should come as no surprise is some are left with a disordered sense how to respond to situations calling for empathy. In these cases, the perception of an empathetic shortfall in autistic people is partially a reflection on the people who have caused this confusion. Autistics may feel strong empathy, but the empathy deficit may be in the observers, who do not make a sufficient attempt to understand the feelings, motivations, and actions of the autistics. The perception of an inappropriate response will instead be placed upon the autistic people when reported, further perpetuating an incorrect stereotype.
Temple Grandin’s experiences with animals help support the ideas that people with autism feel empathy and that some of the perceived deficit in autistics may come as a response to the behaviour of neurotypical people. She discusses understanding the feelings and behavioural motivation of a squirrel by observing its actions (Grandin & Johnson, 2005, p. 205). She is well-known for her work with slaughterhouses, which is based on her observations of emotions in cattle. She saw that cows would hesitate when afraid, and she asked herself how she would feel in the cow’s place. (Kalbfleisch, 2013, p. 214). She has also written about her ability to understand the emotion of a horse by paying attention to subtle signs like the sound of its breathing and the movement of its tail (Grandin & Johnson, 2010, p. 123). The abilities to understand animal responses and put oneself in their place fits the definitions of both affective and cognitive empathy stated by Baron-Cohen and Wheelwright (2004, p. 169), further undermining the “theory of mind” belief that autistic people are unable to feel empathy.
Grandin and Catherine Johnson (2005) state that humans and animals share basic emotions, but that it is easier to understand the feelings of animals because they are more consistent and predictable (p. 88). This provides support for the idea that autistics are capable of feeling empathy, as Grandin is able to comprehend visual and auditory cues to understand the feelings of these animals. Recognizing these intricacies of animal behaviour, using this information to attribute emotions to the animals, and putting oneself in their place matches Titchener’s definition precisely, further establishing the fact that autism and empathy are quite compatible. If the barrier to empathetic understanding does not exist between autistics and animals, this also supports the idea that part of difficulty with empathetic understanding may be caused by other people, rather than, or in addition to, autistic people.
Baron-Cohen’s “theory of mind” hypothesis continues to be cited, despite significant changes in the understanding of autism in the 31 years since he put forward the theory. Taking his statements from 1985 at face value is no more logical than continuing to accept other statements from the same paper, including the dated statement of a 1 in 2,500 rate for the prevalence of autism (Baron-Cohen, Leslie, & Frith, 1985, p. 37), and the thoroughly discredited claim that “the majority of autistic children are mentally retarded” (p. 38). The ideas of Baron-Cohen and other autism researchers have created a false belief of unfeeling individuals, which In an article published by Autism Speaks, Dr. Roy Q. Sanders (2011), former Director of Psychiatric Services at Atlanta’s Marcus Autism Center states, “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).” This attitude serves only to segregate autistic people further by creating and perpetuating an untrue and damaging stereotype. While some observations have supported the theories of Simon Baron-Cohen, these tests, which have been called into question, should not be taken at face value when accounts from the people in question show the exact opposite. First-hand accounts of autistics and those closest to them show a strong, and even heightened, sense of empathy. Rather than making assumptions and judgments based on an untrue stereotype, people working with autistic individuals need to be aware of these feelings in order to support them and work with them to develop strategies to communicate their empathy effectively.
Baron-Cohen, S., Leslie, A. M., & Frith, U. (1985). Does the autistic child have a “theory of mind”? Cognition, 21. 37-46.
Baron-Cohen, S., & Wheelwright, S. (2004). The Empathy Quotient: An investigation of adults with Asperger Syndrome or High Functioning Autism, and normal sex differences. Journal of Autism and Developmental Disorders, 34(2). 163-175.
Carter, L. K. (2013, May 17). Autism and empathy. Retrieved from http://www.huffingtonpost.com/liane-kupferberg-carter/autism-and-empathy_b_3281691.html
Donaldson, S. I., & Grant-Vallone, E. J. (2002). Understanding self-report bias in organizational behaviour research. Journal of Business and Psychology, 17(2). 245-260.
Dziobek, I., Rogers, K., Fleck, S., Bahnemann, M., Heekeren, H. R., Wolf, O. T., & Convit, A. (2008). Dissociation of cognitive and emotional empathy in adults with Asperger Syndrome using the Multifaceted Empathy Test (MET). Journal of Autism and Developmental Disorders, 38, 464-473.
Grandin, T., & Johnson, C. (2005). Animals in translation: Using the mysteries of autism to decode animal behaviour. New York: Scribner.
Grandin, T. & Johnson, C. (2010). Animals make us human: Creating the best life for animals. Boston, MA: Houghton Mifflin Harcourt.
Kalbfleisch, M. L. (2013). Rare and powerful visual–spatial talent: An interview with Temple Grandin. Roeper Review, 35, 212-216.
Markram, K., & Markram, H. (2010). The Intense World Theory – a unifying theory of the neurobiology of autism. Frontiers in Human Neuroscience, 4:224, 1-29.
Remington, A., & Frith, U. (2014). Intense world theory causes intense worries. Retrieved from https://spectrumnews.org/opinion/viewpoint/intense-world-theory-raises-intense-worries/
Robertson, R. (2012). Reaching one thousand: A story of love, motherhood and autism. Collingwood, Australia: Black Inc.
Russell-Smith, S. N., Bayliss, D. M., Maybery, M. T., & Tomkinson, R. L. (2013). Are the autism and positive schizotypy spectra diametrically opposed in empathizing and systemizing? Journal of Autism and Developmental Disorders, 43, 695-706.
Sanders, R. Q. (2011, April 20). The experts speak: Hard times come again no more. Retrieved from http://blog.autismspeaks.org/2011/04/20/experts-reflect-on-parenthood-finale/
Slavin, S. (2015, June 29). Autism: Feeling sympathy for inanimate objects. Retrieved from http://adultswithautism.org.uk/autism-feeling-sympathy-for-objects/
Smith, A. (2008). The empathy imbalance hypothesis of autism: A theoretical approach to cognitive and emotional empathy in autistic development. The Psychological Record, 59, 273-294.
Stubblefield, A. (2012). Knowing other minds: Ethics and autism. In J. L. Anderson & S. Cushing (Eds.), The Philosophy of Autism (143-166). Lanham, MD: Rowman & Littlefield.
Terra, C. (2012, June 7). The hidden autistics II: Asperger’s in adults and empathy. Retrieved from http://www.aspiestrategy.com/2012/06/hidden-autistics-ii-aspergers-in-adults.html
Zurcher, A. (2012, June 18). Debunking the theory of mind. Retrieved from http://www.huffingtonpost.com/ariane-zurcher/autism-theory_b_1594706.html