Misconceptions of Empathy in Autism

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.

 

References

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

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High Functioning my Ass

I read this and it really resonates with me. I see so much of my loved ones in it. I just wanted to share it with you as it really shows how hard the struggles can be and how they add up.

Antleader's Journey

CN: autistic burnout or shutdown

TW: ableism

I think I should be fired from adulting effective immediately. So many people tell me I’m high functioning, but the reality is that’s a load of bunk on two counts: 1) I am not high functioning because I can barely do the tasks they think makes me high functioning and 2) functioning labels are all kinds of animal feces.  What follows is a list of the things that have happened in the last week.

Thursday

Last Thursday, the writing center theory class that I coteach had a discussion on disability and the parent of an autistic kid said we need to make our clients, students, and kids “normal” (It makes me uncomfortable just writing that).

Friday

The next day, I went to a disability event at my university where they had disabled people lead simulation experiences of their own disabilities…except autism, which…

View original post 1,115 more words

Stimming and the Benefits for People with ASD

I have not had a lot of time to write for my blog.  My husband and I have been taking an online course on Autism which has required most of my writing time.  I did have to write a research paper for the course, and I thought I would share it on here since I put work into it.

As a requirement of the course, I had to use person-first language, which is not my preference.  Please do not read this and think that my opinions on that issue have changed.

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Reading through a number of written works by individuals with autism creates an awareness of how important it is for them to be able to self-stimulate, or stim.  The stimming is an important part of being for people with autism, and the efforts of the population with typical neurotype to restrict, restrain, or limit stimming is harmful to people with autism.  The stims are incredibly variable and serve many functions, making life happier, easier, and less stressful for people who find the world often overwhelming and difficult to understand.

The world can be hard to process for people with autism, and stims can help by providing a way to self-regulate, to gain control of one’s own sensory input.  There are many ways that this happens.  One is through regulating emotions. According to The Stimming Checklist (n.d.), “Often emotions like sadness, anger, or anxiety will prompt stimming as a way to both experience these less pleasant emotions while also keeping our cool.” Positive emotions also elicit stimming in most people with autism.  Many adults with autism report relying on stims to help them regulate during social situations.  Social interactions, even after years of supportive therapy, can be very difficult for people with autism, and stimming is reported to allow them to participate in more varied situations, with more people and stimuli, for longer periods of time.  The sensory processing difficulties that accompany autism can be regulated by stimming, creating a way for people with autism to create their own sensory input.  This can result in greater sensory input when needed, or a sensory distraction when there is already too much sensation around that is out of the individual’s control.  Finally, a pragmatic regulation in an attempt to be considerate around other people can be a reason for stimming.  For example, “In a crowded lecture hall with a fascinating speaker, we might want to jump up and down with excitement and ask a million questions because we are so engaged, but if we believe this will not be helpful to ourselves or our classmates in the long run, we might choose a stim like twirling our pens or rocking in our chairs to remain focused and engaged without disrupting others” (The Stimming Checklist, n.d.).

People with autism report that efforts to curb their stimming are painful and result in more trouble than the stimming itself caused.  Emma, a poet who relies on alternative communication describes stimming as self-care, she says when asked to stop stimming, “it makes thick feelings worse.” (Zurcher, 2012).  Adults with autism report feeling that the “therapy” they were subjected to as children in order to learn how to pass as less autistic left deep emotional scars.  Feelings of shame are connected to the belief that stimming is wrong.  People report that stilling their stims leaves them open and vulnerable to the assault of daily living in a world that is too much to handle.  They also report that the negative emotional associations and judgment that society places upon those who stim break down the self-esteem and self-worth of individuals.  Julia Bascom (2011, April 5a) describes it as:

The hands are everywhere.

They’re at our chins. “Look at me,” with a face pressed in so close to yours that you count the pores until they force your gazes to meet. They grab our hands, “don’t do that, people will think you’re retarded.” They smack away picking fingers, because our foreheads must be pristine and easy-to-look-at for them. You turn away, pull away, try to put some distance in so you can breath, and they grab your hands, your hips, your shoulders and twist you back. You bounce your leg—surely you are allowed this?—and they press a hand to your knee, stilling you. Everyone taps their pencil, but when you start their hand closes over yours and won’t let go.

 

This is the opposite of how students in class should be made to feel, regardless of whether they are dealing with a disability or not.

Self-Injurious stims are often cited as the reason to stop stimming altogether.  Many people with autism do hurt themselves or injure themselves when stimming.  However, the idea that people with autism need to suppress their autistic nature and pass as people with typical neurotypes creates additional stress on already stressed nervous systems.  People with autism are dealing with a minefield of sensory assaults and attempting to appear different from their inner nature can be more than they bear.  Bridget, a person with autism, states that these behaviours are often a result of students “passing,” or forcing themselves to appear as if they do not have autism. She tries to follow instructions to stop stimming but finds that the need does not disappear. She writes, “Those occasions damage me, chipping away at what is already paper thin defenses until there is nothing left” (It’sBridget’sWord, 2012). A better solution to help students who feel the need to injure themselves is to be proactive and give them space and acceptance to stim safely in public, openly, as they feel they need to.  That way, perhaps more of their defenses can be strengthened and they would not feel so vulnerable.

Some research supporting the idea that stimming should be stopped suggests that it is harmful to learning and focusing.  It certainly can be distracting to others in a classroom, and the inclusive model of education creates opportunities for students with autism to annoy and disrupt their classmates.  An online search of how to stop stimming comes up with many results and reasons to “help” children with autism conquer their need to stim.  The May Institute (n.d.) pontificates,

Self-stimulatory behaviors may seem harmless. But for children and adults with autism who lack social and self-regulatory skills, these behaviors can interfere with learning at school or completing daily living activities at home. They can also be disruptive and upsetting to others, causing them to avoid or ostracize the individual in social settings.

However, in reality, there are many stimming behaviours that are not disruptive and actually help students with autism learn.  One adult with autism writes about stimming and focus, describing it like an itch that unless scratched continually distracts and derails focus.  “If anything, stimming improves my concentration. It’s a release, like sneezing or scratching an itch” (MusingsOfAnAspie, 2013, January 3).  There is also research supporting this idea.  Studies have been done that show that when a person is abstaining from something that they want (need), they have a more difficult time concentrating on a task (MusingsOfAnAspie, 2013, June 18). Students with autism struggle with executive function, and when they are using their brain to stop stimming, they are unable to use it for learning and focusing on the tasks that are being asked of them.  In a classroom, students with autism should be taught socially acceptable behaviour and stim options, and the rest of the class should be taught how to accept and understand the learning needs when in a diverse class.

  
A school environment is precisely the place where social acceptance needs to be taught and modeled.  People who are concerned that the stimming child would be isolated, bullied, or alienated need to work on changing societal attitudes.  Kirsten Lindsmith (2014) describes having a hard time making friends with “same age neurotypical counterparts,” but says that, when she allowed herself to express her personality, she made close friends with a student with ADHD. She recollects fondly, “We got along swimmingly and stimmed together, repeating phrases and sounds and generally torturing our poor math teacher.” Children are adaptable and learn acceptance just as easily as prejudice, so teachers and Education Assistants have a responsibility to demonstrate and encourage friendships with students with autism.

Perhaps the best and most natural reason for stimming is the pleasure it expresses and creates.  Many people with autism have written about dealing with intense sensory input, and the intense joy they feel when they are stimming.  Joy and stimming seem to be inextricably linked; there is joy when stimming, and stimming when there is joy.  The words of adults on the spectrum need to be the authority on this topic, as they share what those of us who are not on the spectrum cannot truly understand. Julia Bascom (2011, April 5b) says that she feels that stimming is a benefit of autism, as it allows her to experience the world in a more enjoyable way. She sees others around her feeling “miserable” because they feel constrained by the need to follow social norms, while she is able to “amplif[y]” her enjoyment of the world through stimming. Reflecting on stimming, she writes,

If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.

Creating a positive, inclusive, and understanding setting by accommodating this need to stim benefits the student. This, in turn, can help create a happier classroom environment for other students, teachers, and Education Assistants.

Stimming is a powerful drive among people with autism, and it is a productive way to deal with the onslaught of sensory inputs they experience every day. Adults on the spectrum need to be the authority, as they are best positioned to describe the desire to stim as well as the positive benefits. They explain how it helps them calm down, focus their minds, and put themselves in a better mindset for learning. Attempts to stop this behaviour can cause emotional damage and a buildup of overwhelming emotions for students who are expected to “pass” as if they do not have autism. Stimming can also be a source of overpowering joy for students, and we should not deprive them of this beneficial aspect of autism to conform to social conventions that are built on an illogical “one size fits all” model.

 

 

References

 

Bascom, Julia. (2011, April 5a). Grabbers [Web log post]. Retrieved from https://juststimming.wordpress.com/2011/04/05/grabbers/

 

Bascom, Julia. (2011, April 5b). The obsessive joy of autism [Web log post]. Retrieved from https://juststimming.wordpress.com/2011/04/05/the-obsessive-joy-of-autism/

 

Harris, T. J. (n.d.). Reducing self-stimulatory behaviors in individuals with autism. Retrieved from http://www.mayinstitute.org/news/topic_center.html?id=355

 

It’sBridgetWord. (2012, October 7). Self injurious behaviors [Web log post]. Retrieved from http://itsbridgetsword.com/2012/10/07/self-injurious-behaviors/

 

Lindsmith, Kirsten. (2014, May 16). Stimming 101, or: How I learned to stop worrying and love the stim [Web log post]. Retrieved from https://kirstenlindsmith.wordpress.com/2014/05/16/stimming-101-or-how-i-learned-to-stop-worrying-and-love-the-stim/

 

MusingsOfAnAspie. (2013, January 3). The high cost of self-censoring (or why stimming is a good thing). Retrieved from http://musingsofanaspie.com/2013/01/03/the-high-cost-of-self-censoring-or-why-stimming-is-a-good-thing/

 

MusingsOfAnAspie. (2013, June 18). A cognitive defense of stimming (or why “quiet hands” makes math harder) [Web log post]. Retrieved from http://musingsofanaspie.com/2013/06/18/a-cognitive-defense-of-stimming-or-why-quiet-hands-makes-math-harder/

 

The Stimming Checklist. (n.d.). So what is stimming? Retrieved from http://what-is-stimming.org/so-what-is-stimming/

 

Zurcher, A. (2012, January 2). An Interview with Emma about stimming [Web log post]. Retrieved from https://emmashopebook.com/2014/01/02/an-interview-with-emma-about-stimming/