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

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/

 

Empathy round 2

I can not say it enough.  Learning about Jake’s autism has been such an incredible key to knowing him.  It is affecting our family more and more.  As we learn more and filter what we are seeing day to day, we are becoming better parents, more understanding people.

I want to revisit the topic of empathy.  My first post on about empathy is here.  We have talked about it in rounds, my husband and I.  We see Jake’s kindness, thoughtfulness, concern for others all the time.  And then all of a sudden something seems off and I can see why people say that autistics struggle with empathy.  Something as simple as, ‘I hurt myself, I need a minute, then a band-aid, and then I can come put the tv on for you.’  It makes me shake my head and wonder, “Kid!  Where is your understanding?”

However, I believe that this seeming lack of understanding does not truly correlate with a lack of empathy.  I think it is more social cluelessness, as explained in this definition and example.

– Social cluelessness

Not being sure how to act without making things worse if someone for example suffers a tragic loss; if they want to talk about the painful event or if they don’t want to be reminded. I think it must be hard for everyone to know, but even more so for a socially clueless Aspie.

When my only friend in 5th grade lost her father I had no clue what to say or do and was too shy to ask anyone for guidance (the information about her father’s death didn’t elicit any advice or instructions from my mother, who was very young and rather Aspie herself) so I just avoided my friend for a long time instead. A shameful thing that I felt bad over for years but I can now have compassion for myself for really not knowing how to handle it.

– Ing, site-author

https://insideperspectives.wordpress.com/emotions/empathy/

What appears as a lack of empathy is probably just Jake trusting that I am mom and therefore I will always be fine and I am here to help with his needs, which according to him often include turning on the tv at the time of his choosing.  I think it is more ego-centrism and cluelessness than genuine lack of empathy.  Ego-centrism is just as common in people with autism as social cluelessness.

“Aspies find it easy to get called selfish just because it doesn’t occur to us to enunciate concerns for others or to ask unprompted casual questions about them. I can remember once getting called selfish for not asking after the health of as family friend who had been seriously ill (he recovered and is alive now). It simply never occurred to me to ask after it as I knew I would hear any news I needed to.”

– Maurice, Aspie from Scotland

https://insideperspectives.wordpress.com/emotions/empathy/

In my previous post, I discussed the idea that autistics actually experience an overwhelming sense of empathy.  This is not the only opinion, however.  One writer I have really enjoyed reading is an adult on the spectrum who disagrees with the idea that autistics have an over-developed sense of empathy that is simply misunderstood.  She also thinks there is nothing wrong with a genuine lack of empathy.

Generally, when I feel emotionally overwhelmed by another person’s emotions, it’s related to my alexithymia (emotional dysfunction). In short, I have trouble regulating my own emotions and I have trouble discriminating between emotions that are “aimed at” me and emotions that are “aimed at” someone else. If I encounter two people having a shouting argument, my emotional reaction is the same as if I were the target of their shouting, as if they were both angry at me.

I don’t think this is empathy. I’m not sharing their emotional state (anger) so much as feeling like the target of it. If I were sharing the emotional state of the people in the shouting match, wouldn’t I feel like shouting at someone, too? Instead, I feel frightened and intimidated. I feel an intense need to escape from a situation to which I’m nothing more than a bystander.

In fact, in this kind of situation, the only person I’m thinking about is myself and how uncomfortable I am. There I go again, taking my own perspective. My distress at the situation might outwardly appear to be empathic but my internal reaction is a great big “MAKE IT STOP, NOW.”

http://musingsofanaspie.com/2013/01/17/the-empathy-conundrum/

This idea is supported by other bloggers, explaining that our definitions of empathy are the problem, not the actual lack of empathy.

Now, let’s look at what society defines empathy to be.  Empathy, as many of us imagine it, is the ability to feel bad for someone else.  However, is that really what empathy is?  Let’s examine the true definition of empathy, as reflected in the American Heritage Dictionary:

“Identification with and understanding of another’s situation, feelings, and motives.”

http://reinventingmommy.blogspot.ca/2013/01/does-my-child-lack-empathy.html

This suggests that yes, it is hard to identify with and understand another’s feelings and motives.  In conversations with my husband, I would quickly say that we both struggle with this.  Any one of our arguments can be traced to a misunderstanding of the other’s feelings and motives.  Rather, we all need to work on empathy, and recognizing that it is a struggle for Jake and other autistics will give us more patience when we deal with them.

When I was a kid, I couldn’t really empathize well. Without realizing it, I would say things that hurt people’s feelings (I still do). The aspie doesn’t really “think on the fly” during conversations. There’s a delay and we often don’t pick up on non-verbal or non-obvious cues that we’re hurting someone.

http://life-with-aspergers.blogspot.ca/2007/10/aspie-and-empathy.html

However, this has little or nothing to do with the concern, care, and love that autistics feel towards others.  It may not even be as important as it is often portrayed to be.

That’s not to say that I don’t experience concern toward other people. Simple concern for others, though, isn’t so much empathy as sympathy. Sympathy is a concern for the wellbeing of another person. It can exist in the absence of the empathic act of sharing an emotional state with that person. It often arises from empathy, but it doesn’t have to.

http://musingsofanaspie.com/2013/01/17/the-empathy-conundrum/

Empathy has nothing – NOTHING – to do with love or one’s ability to care.  Think about it. Have you ever loved someone that you just didn’t always understand?  Maybe your autistic child?  Beyond that, did you ever have a “crush” on someone who seemed so outside of your type?  Just because you look at your child and can’t identify how he or she is feeling doesn’t mean you love him or her any less.  Have you ever loved someone unconditionally?  The definition of unconditional love seems to imply that it is outside of one’s ability to understand or do or say anything.  They simply love.

http://reinventingmommy.blogspot.ca/2013/01/does-my-child-lack-empathy.html

Yesterday we took Jake to Wal-Mart to look at the Lego.  Just to look.  It’s a reward for him, something special to do.  While he was there memorizing all of the packaging, another couple and their kids came into the aisle as well.  When it became clear that they were also there to look at the Lego and not just passing through, Jake quickly became uncomfortable.  My husband, who like me is quickly learning, got down at his level and had a quick, quiet conversation.  Jake explained that he ‘didn’t want to cause trouble when we [Jake and his dad] have to leave.’  As in, walking out of the aisle past these other people would disrupt their Lego looking and be uncomfortable.  So they solved the dilemma by agreeing to leave out the far end of the aisle.

This to me screams of both the ability to care and the ability to put oneself in the position of another.  However, it doesn’t actually relate to true empathy according to the definition.  Jake and his dad treated the other people in the store the way that they would have wanted to be treated if they were in the same position.  Treating others the way they want to be treated.  A lovely way to treat people, but not actually understanding what the other people DID want.  They may have been looking for a gift and wanting Jake’s suggestions.  Because no conversation happened, no actual understanding of another’s motivations happened.  No one had any idea of the others’ feelings or situation.  In fact, my husband was the only one in this particular scenario to truly demonstrate empathy, and it was towards Jake.

I think that teaching our kids to be kind, to care, to listen and understand other people is what is important.  Eventually this will translate to sympathy, and when it really matters, empathy.  But all kids and even adults need to work on it.  Knowing that the mental gymnastics required are quicker, more difficult for autistics is something that will help me to be more patient and sympathetic.

Not Alone

As April and Autism Awareness month roll on, I have really noticed that it is amazing how people can help each other.  I have been spending every minute that I have to myself online reading the thoughts, wisdom, and challenges of others around the world.  Autistics, parents, researchers, you name it.  It is truly incredible, inspiring, and thought-provoking.  I am growing, seriously growing, and my goal of becoming an amazing, educated, know-what-I’m-talking-about, autism mama is morphing into a passion.

It turns out there is a lot to learn! Ha!  I know!  Those of you out there who have gone before me are laughing.  I knew I didn’t know things.  I had no idea how much there is to learn.

I am incredibly thankful to these people, real people, out there, in the real world, sharing their revelations, thoughts, experiences, and ideas with me.  I don’t know them.  They are just giving, opening their lives and minds to the world, and oh!  It’s a community!  It’s people like me!  Like Jake!  Like our family!

I have found great inspiration in blogs from other moms.  I have read hours of stories of their struggles and victories, their hopes and their experiences.  Equally inspiring are the words of adults on the spectrum, who have shared their stories.  I have devoured books and combed blogs.  The words of the people who live with autism are awe inspiring.

What’s more, they are friendly.

There is a real, authentic community of people growing that is welcoming and kind.  It is hopeful and encouraging.  It uses words I need to wrap my head around and get used to, but I know now will become an easy part of my vocabulary in time.  Things like neurodivergency and stimming, autistic and proud.  The following was written by one such autistic, and it is resonating deeply with me.

“I’m not alone” doesn’t have to be an adulthood revelation; it can be a given. Your child deserves to grow up knowing that he isn’t alone, that there’s a whole community that will embrace him because he’s one of ours.

– You, Yes, You, Need Autistic Friends, Neurodivergent K 

I am going to be a part of this community.  Jake is going to be a part of it.  He will not be alone, he will not be a minority, and he will have a voice, and a place where he is among others like him.  Where he is not different.  Not special.  That is funny to me.  And wonderful.  There are many places where he will be special.  Where he cannot help but be noticed.  Where he is a minority.  But out there, in the internet, there are more of our people.

Thank you people.

Our authentic community surrounds us. I am adding our stories to the rest, sharing education with those I know personally and those who now read this out there online.  What an incredible thing.

Autism Awareness Month, day one

It’s April!  Autism Awareness Month!  I have so many thoughts about this.  Today though, I was very much “aware” of Jake’s autism.

It all started this morning when he did not wake up independently and I had to go wake him up for school.  I was thankful that he got a few moments of extra sleep, as he is exhausted, but worried, because me waking him is always harder.  Today was no exception.  I woke him and was greeted with tears.  Imagine waking up first thing in the morning and being so overwhelmed and out of control that you just cry.

After he calmed down and we coaxed him out of bed, allowing him to drag his blanket to the breakfast table, I realized that it was library day at school.  I searched the entire house for the specific library book bag, and didn’t find it.  Trying to avoid meltdowns and anxiety at school, I phoned the librarian right away and explained the situation.  She was great about it.  And ten minutes later my sweet husband found the bag.  Crisis averted.

We managed to get him off to school without further calamity.  However, I did concede to watching America’s Funniest Home Video’s while we ate breakfast, something usually reserved for the weekend.

After school I had to take him to the doctor.  He has a persistent sore rash on his back.  In preparation for this hopefully short appointment, I dropped off the other two kids with my mom.  I waited until Jake was safely and successfully in the van, and then reminded him that we were going to the doctor.  He cried.  I told him that if he was awesome we could go somewhere for a treat, suggesting the library or DQ for a sundae.  Instantly he turned around and started talking about sundae flavours.  Until we parked. Seriously.

I reminded him of our deal and promised that the doctor wouldn’t hurt him, just look at his back.  Ahhhhh… alright.  Out of the car and into the office we go.  The appointment was short, but would have been shorter if I could have heard what the doctor said the first time he said it.  Jake kept interrupting, climbing on me, putting his hat over my face, telling us, “This is boring, I’m done.”  I was frustrated, and trying to remain patient.

Ice cream was special and sweet.

We went to my parents’ place for dinner.  He had a turn to play on their iPad before dinner, which was special and made him happy.  But it also made him scream and cry when it was time to eat.  Even though I gave him three warnings that dinner was coming up and he was going to have to put it away.

He ate as though starving, then cried again when we said that there was no further iPad play time before bed.  Cried about eight times more, every time his Lego constructions fell apart.  Cried at the thought of Aiden walking too close to said Lego constructions.  Cried when it was time to go home.

Home.  We started the bedtime routine.  The same bedtime routine we have been running for about two and a half years.  I was putting Penny to bed and I could hear the sobbing because he wasn’t getting enough help brushing his teeth.  Apparently he had to do it alone tonight because he spit on his dad.  Made sense to me.  Only it lasted so long I was done with Penny.  So I helped with teeth and with Aiden who was refusing to go to the bathroom.

I left for the store as they sat down to read books.

I returned, to find Jake crying, again, that he needed another story.  I guess they weren’t listening to Dad, and he had taken a break.  So we tagged off and in I went.  I told a story, prayed with them, started to sing them a lullaby, and then… was interrupted.  Jake asked, “Did you know that the grey Ninjago is the best climber?”  Seriously.

“No.  I do now.”

I resumed singing.  I made it through.  I kissed their sweet heads and came down here.

So today, I was aware of autism here.  It was anxious.  Worried.  Scared.  Frustrated.  Sad.  Overwhelming.

It made me frustrated.  Worried.  Sad.  Overwhelmed.

Empathy round 1

When we were working through the diagnosis process for Jake, there were many, many questionnaires.  I understand that they are useful and important, that they are a quickly assessed way to gather a great deal of quantitative information about situations that are often emotional and complicated.

But, Heaven help me, they are so hard.  Facing page after page of rating your child, your family, your life, your reality is excruciating.

One of the things the questionnaires attempt to tease out is the question of empathy.

Empathy.  Only one of the most complicated of human experiences.

Empathy.  The ability to put oneself in the shoes of another, to imagine an experience from someone else’s point of view.

How on earth do you find out if a child, a child under age five, experiences empathy?  How can they tell you?  They cannot.  Add on to that social problems, sensory issues, and a completely misunderstood brain function.  Now try to find out if that child experiences empathy.  Right.

I know amazing teachers who work on developing empathy.  I know wonderful parents who try to model empathy.  I know of programs where empathy is supposedly taught directly.

I know that Jake struggles with empathy.  I just don’t know why.

He has always shown little concern for other children when they are hurt.  However, this is our observation at home, where the ‘other children’ have been his brother or his cousins.  They pick on each other.  They are kids, boys.  They push each other, wrestle, steal each other’s toys.  Inevitably, someone ends up hurt and crying.  Jake usually responds by walking quietly away from the crier.  We have asked him, oh, so many times, “Look at Aiden!  Does he look happy?  Does he look hurt?”

We didn’t know.  We didn’t know that processing facial and emotional cues was hard for Jake.

Does that mean he isn’t empathetic?

Now that he is a little older, all kinds of interesting things are happening.  He has expressed great concern about making sure that all of the kids in the class have the right supplies.  He has been anxious because some of the girls in his class haven’t had the chance to be first in line after lunch.  Anxious!

This week, we have all been sick.  My husband was sniffling as he played Lego with Jake on Saturday.  Jake asked him if he was hurt.  No.  Sniffling continued.  Jake again asked him if he was alright.  Dad finally clued in: Jake thought he was crying!  So they talked about Dad being sick and Jake was relieved.  Lego continued.

That all sounds a great deal like empathy to me.

So I did like I do, and went researching.  I found this:

What I saw in these [autistic] students instead was hypersensitivity – painful hypersensitivity that caused them to be persistently confused and disoriented about their surroundings and the people around them. It wasn’t that they didn’t care or weren’t empathic; not at all. It was that life was too loud and too intense, full of static and confusion (this idea would soon be called the Intense World theory of autism, see Markram, Rinaldi, & Markram, 2007).

http://karlamclaren.com/autism-empathy-and-the-mind-blindness-of-everyday-people/

I’ve written about the Intense World theory here.  You should read that too.  It’s all so amazing.  And this finally makes more sense.  I read what some other autistics said about their feelings related to empathy.

“If anything, I struggle with having too much empathy” one person commented. “If someone else is upset, I am upset. There were times during school when other people were misbehaving, and if the teacher scolded them, I felt like they were scolding me.”

Said another,

“I am clueless when it comes to reading subtle cues, but I am *very* empathic. I can walk into a room and feel what everyone is feeling, and I think this is actually quite common in AS/autism. The problem is that it all comes in faster than I can process it.”

http://www.thedailybeast.com/articles/2009/05/11/a-radical-new-autism-theory.html

I have always known that Jake is more of an observer than many other kids.  He will watch a group of kids play rather than joining in.  He notices everything!  All kinds of details.  Why would we assume then that he doesn’t notice how others are feeling?

Maybe he doesn’t understand their faces.  Maybe he notices the sounds they make, like sniffling.  Maybe he notices where they stand in line.  Maybe he notices if they do not have an eraser, but everyone else does.  And if he can understand how that would feel, is that not empathy?  It just isn’t the way I learned empathy.  But I am learning.

And oh!  If it’s loud, and messy, and someone is hurt, and yelling and crying and upset, what if that is simply too much to bear, to relate to, to comprehend and know what to do?  What if when your little brother cries, you don’t know what to do?  So you walk away, a few steps, quietly.  You play with that toy that you stole, the one that made him cry.  Maybe it just takes longer to figure it all out.  Maybe you need to be able to listen?  To hear what’s going on without all the red faces and tears getting in the way?  I don’t know.  I just wonder.

Jake consistently prays for people who are sick.  He asks us about our day, what our favourite part of the day was.  He asks us what’s wrong when we are sniffling.

I say he’s got plenty of empathy.

The World is Too Intense

I have found a few sources that discuss how the sensory disorders that are so often associated with autism are inseparable from the biology in the brain and the diversity of autistics.  Then I found this website and it describes a theory of autism that explains both the sensory disorders, and the diversity, so nicely.  It makes total sense to me, and I find it remarkable.

The Intense World Theory states that autism is the consequence of a supercharged brain that makes the world painfully intense and that the symptoms are largely because autistics are forced to develop strategies to actively avoid the intensity and pain. Autistics see, hear, feel, think, and remember too much, too deep, and process information too completely. The theory predicts that the autistic child is retreating into a controllable and predictable bubble to protect themselves from the intensity and pain.… It is a unifying theory because it takes into account and explains the many different results and interpretations from a spectrum of studies on autism.

http://wrongplanet.net/interview-henry-and-kamila-markram-about-the-intense-world-theory-for-autism/

What this quotation describes is exactly what I have noticed in Jake.  He reacts when he is overstimulated.  I can see how different people would find different ways to cope, and this would account for all of the different kinds of autism we see.

I read about how many autistic people can’t see the forest for the trees.  They are often so focused on details that they can’t see the big picture.  Often this can be quite literal, as in not being able to cope in a group of people because they are processing each individual person and thing in the room so completely.

Today, Jake couldn’t go to school.  He was just an emotional, overloaded, sobbing mess.  I have no idea what was wrong.  There was no fever, no runny nose, nothing obvious.  I eventually gave him some ibuprofen hoping that if something was hurting him, it would ease.  And ease it did.  The change was dramatic.

One minute he was gripping me and screaming that he wanted to go to the library RIGHT NOW to get a Lego Star Wars book, and the next he was calmly showing Penny his collection of cars.  It was about 20 minutes after the medicine was given.  Something was really bothering him.  I may never know what.  I hope that as he gets older he will be able to tell me so I can help him.  It could be anything-a smell, lights, sounds, a headache?  I can only speculate.  Kids with autism often find the smell of cleaning solutions to be too much to handle.  I have noticed that Jake has torn off his socks his whole life.  I think that the elastic tightness on his feet bothers him.  I ran through what he ate the night before, wondering if there was something different or particularly agitating.  I came up with nothing.

He was reacting to a pain, though, and it was coming out in tears, punches, pinches, and yelling, this morning.  I guess I am becoming more understanding.

I did have to leave the room once, to calm myself and remind myself that this is what was going on.  It isn’t easy to stay in the moment and keep my knowledge in front of my emotions.  I sure wanted to yell at him, give him a time-out, and send his weeping butt to school so I wouldn’t have to deal with it.  I’m glad I didn’t though.

We ended up having a great day.  He stayed home all day.  We played Lego.  We watched TV, we played on the iPod.  I made a lunch I knew he’d like, and sure enough he ate joyfully.  By the time my husband came home from work the house was calm and happy, and I actually went out for coffee with a friend.  I came home to find the three kids all playing peacefully and dinner was started.  I may never know what it was this morning.

Overall, knowing that the world is sometimes just too much to bear is very helpful for me.  It gives perspective and understanding.  From there I can try to find appropriate consequences for the violence and work on being patient with the tears.