Category Archives: empathy

“Crayons Have Feelings” By Emma

I’m always so excited when Emma tells me “put it on the blog” because my dream has been that this blog will be something she wants to, one day, take over as her own and where she will permit me to, occasionally, make a “guest” appearance.

What follows was Emma’s response during her RPM session to write about something she cares about in a persuasive manner.  She skillfully demonstrates theory of mind, empathy and an abundance of compassion I wish the rest of the world would try to emulate.

                     “Crayons Have Feelings

“The colors are many in a box of crayons.  All over the world people use crayons to make them happier.  It is never used as a way to punish.

“Did you ever think of what the box of crayons felt like when they were opened?

“Notice which colors are used the most.  They are ripped and sometimes broken.  The less popular colors, like brown, look so new they can be displayed in a museum.  Nobody plays with them.  They watch the other colors play and roll with their friends in the mud.

“Brown crayons are lonely.  Red crayons get the most attention.

“You should show the lonely colors on the front of the box.

“Do you have questions?”

I am persuaded,  Emma.

A Box of Crayons

A Box of Crayons

An Analogy – Communication via Violin

*This is a guest post by a friend of mine who is brilliant and thoughtful and compassionate and patient and, well, all-around fabulous.

*Guest Post by DYMPHNA

This blog post is a brainstorm I had after reading several posts (‘here‘ and ‘here‘) on this blog regarding the idea of communication, particular why spoken language, which seems so natural for some, is more difficult for others.  First, I must own the fact that I have a pretty strong relative privilege in this vein.  Spoken language comes naturally to me, so I am writing all of this with the caveat that I might be totally wrong.  If Autistics who are less inclined to spoken language correct me on anything I write in this blog post, listen to them, not me.  Secondly, this is an analogy and all analogies are imperfect; my hope is that this might provide an accurate framework through which people who grasp spoken language easily might be able to understand the difficulties of those for whom it does not come so easily.  (This process for learning music is way out of order from how people actually learn music.  Please don’t kill me, music educators.)

Okay, so, in this analogy, you are going to take this page of information and realize it into meaningful sound:

[Image description: Picture is the first page of the Chaconne
from Bach’s Violin Partita No. 2 in D Minor, BWV 1004.]

Now, for many of you who haven’t learned anything about musical notation, you are already at a loss.  The picture above is literally meaningless to you.  There are some horizontal lines and there are dot’s connected to vertical lines and there are these weird symbols that look like a lowercase b and a #.  If you haven’t learned to read musical notation, the only things on this page that you even recognize are some arabic numerals that you have no idea how to interpret and this Italian word at the top “Ciaconna”, which the dictionary defines as, “a slow, stately dance of the 18th century or the music for it,” a definition which is not particularly helpful.  With the resources available to you, you have established that this is an Italian dance from the 1700s.  So in order to realize the page I put above you, you need to become fluent in musical notation and have the ear training necessary to understand what the pitches are and how to keep time properly, a process which many people find quite difficult.

So, having learned all you need to know about musical notation, you’re ready to perform the Chaconne, right?  Well, probably not, as you have no idea how to play the violin.  (Violinists, you are playing the piece on the piano.  If you are also a pianist, you’re playing it on the flute.  If you’re also a flautist, you are playing it on the musical saw.  If you also play the musical saw, you need to just accept the premise of this analogy and move on.)  If you are not a violinist, and I imagine that most of you are not, you don’t even know how to set up, hold, or tune the instrument, let alone produce a decent sound and then connect those sounds into a meaningful piece of music.  So now that you understand what the notation means, you need to tackle the actual physical reality of learning how to play the instrument, a skill that takes years to do competently, decades to do proficiently, and half a lifetime to do masterfully.  You need to learn how to hold the instrument and the bow and all sorts of skills about how to make the correct sounds come out of the instrument.  Likewise, before you can do any of that, you have to learn to set up and tune the instrument, skills which are quite challenging to the beginning player.  (As someone who has attempted to play the violin on several occasions, I can attest to this.)  The process usually involves tedious work on many minute elements of technique that are by themselves very difficult, such as using different bow strokes, crossing strings, and pressing the fingerboard in the correct location.  Moreover, you have to keep track of all of these elements of technique while attempting to accurately realize a score of music, so in addition to the difficulty of playing the music, you are simultaneously applying the skills you’ve learned in step one.

Congratulations!  Having done that, you have the skills needed to accurately realize the first page of Bach’s Chaconne, a skill that will land you zero audiences and communicate very little.  What most people don’t realize is that very little information is actually given to the musician by the composer.  Many elements, such as the subtle ebb and flow of time, the varying loudness of any given instant of music, vibrato, etc., the elements that make music expressive and, if you’ll pardon the expression, musical, are not given to the performer by the composer.  If the performer performs the work exactly as written on the page, it will sound mechanical and banal.  This is why proficient musicians spend a great deal of their time focusing on interpretation.  They are trying not only to reproduce the pitches and rhythms indicated on the page, but also subtlety that music needs to be truly compelling and persuasive.

All right, having done all of that, you can now convincingly convey great musical ideas.  Musical ideas written by Johann Sebastian Bach.  While you certainly bring something of yourself to the table, none of these are ideas that you originally had.  The basis for all of these ideas was written almost three centuries ago.  In speaking, this is analogous to someone being able to convincing recite a work by Shakespeare.  A great skill in its own right, but all the while we’ve still fallen short of our actual goal, which is to communicate our own ideas effectively to others.  Right now we are only equipped to communicate other people’s ideas, albeit with our own twist.

I would like to pause here and draw some of the analogies between playing the violin and speaking.  First of all, there is the process of developing a rudimentary understanding of what music is, which corresponds to having a crude and basic understanding of the English language.  I will discuss the full understanding in just a moment.  Next, we have to negotiate the physical reality of playing the instrument.  We might have a fantastic conception of what the Bach Chaconne should sound like, but that means nothing if we lack the ability to realize it on the instrument, which is an inherently physical process.  This, not surprisingly, corresponds to the actual motor process of forming words.  For many of us, those processes seem pretty simple, but imagine what it would be like if they didn’t come naturally to you.  Imagine if everyone seemed to have this innate aptitude for holding the violin and producing pleasant sounds on it while you are struggling to get notes out.  Most people, having able or neurotypical privilege, take this ability for granted, so I want you to imagine a world where, instead of speaking, we communicated by playing the violin, a skill for which many people do not have the natural aptitude.  This is where the Social Model of Disability comes into play.  For those who find speech easy but playing the violin difficult, this world is fine for them while they would be disabled in the violin world.  Likewise, those who find playing the violin easy and speech difficult are disabled in this world but fine in the violin world.

Resuming our violin analogy, there is a lot more to speech than playing the Chaconne by J.S. Bach.  As I stated before, most people seek not to reproduce the ideas of others, but rather to convey their own ideas, which they do in real-time.  In music, this equates to improvising, a skill that isn’t necessarily that difficult provided you don’t seek to convey anything that complex.  However, there are still things to consider.  First, you want to have the semantics of what you are improvising accurately reflect what you are trying to convey.  I cannot think of an accurate analogy for this, so please leave an idea in comments if you have one.  On top of that, you have the elements of music theory, which is essentially the grammar of music.  Certain notes in certain contexts convey specific meanings that might not be conveyed in another context.  Without using this correct syntax, what you are trying to convey will start to sound random and disorganized or possibly just “wrong”.  This process comes very easily to most people, but understanding grammar is no simple task, a fact which anyone who has tried to learn a foreign language can testify.  In our native language, we can just say what “sounds right” without having to put too much thought into it.  In the same way, a native tonal musician might be able to tell you that a C-Sharp and a G need to resolve to D and F intuitively without explaining the theoretical reason behind this in the same way that you know whether to use “me” or “I” in a sentence.  However, just because this process comes to us intuitively doesn’t mean it isn’t going on and it’s something we oughtn’t take for granted when thinking about communication.

So what is the point in all of this?  I’ve drawn all of these parallels about how spoken language is like playing the violin.  The point in all of this is the following:

First, the process that we think of as intuitive and easy is not necessarily that easy or intuitive for others.  I don’t find playing the piano very difficult, but most people would struggle to play something rudimentary on the piano because they are dealing with all of the things I mentioned above.  Moreover, at the piano, you at least have the reassurance that if you press a key, a musically sounding sound will come out, something that isn’t guaranteed on a violin or when speaking (which is why I chose the violin for this analogy).

Second, I want people who find things to be easy and intuitive to think about what it might be like for those who don’t find the process so intuitive.  As many people are not instrumental musicians, I challenge you to think about what challenges you would face in the world if, instead of communicating via mouth sounds in natural language, we communicated by instrumental music.  Hopefully this exercise will expand your empathic process so that you can understand what it means to be disabled without medicalizing us or assuming we have a deficit.

Third, I want everyone to think about some of the strategies you might employ in this alternative violin world where you are struggling with many of the rudimentary elements of communication.  Maybe, since you don’t want to have to deal with the challenge of writing a syntactically correct and semantically accurate statement while dealing with the difficulty of playing the instrument, you might instead use an existing melody that approximates what you want to say instead of attempting to improvise something of your own.  Maybe in this violin world, you’ll get special education for doing this, seeing that you have musical echolalia and your ability to use spoken natural language, a skill that frustrates you as you want to use it to express yourself while no one uses that skill, is seen as a “splinter skill”, not inherently useful, but rather a means to develop your violin skills, which are the “correct” way to communicate.

I think this exercise in empathy is much more effective than the wholly appropriative and mocking “Be Disabled for an Hour” idea that many people try out.  Of course, you need to recognize that this will not give you a perfect view into our world.  Being that you don’t live in this culture in which you are disabled, there are things that might not occur to you that are realities that disabled folks have to deal with every day.  Thus is the nature of privilege.  But I hope this has expanded your notion about how disabilities impact your life and how society defines what is and is not a disability.

Career, Parenting, Autism and Cultivating a Moral Imagination

I’m attending the Aspen Ideas Festival from early in the morning until late at night.  Richard and I have joked that the Aspen Ideas Festival is summer camp for adults, minus the swimming, boating or water skiing activities.  As I am there almost constantly, Emma really misses me.  “Go with Mommy?” Emma asked yesterday morning as I got ready to attend a 7:45AM session on “Our Moral Imagination” with Jane Shaw, introduced by Anna Deavere Smith (I’m giving myself a shameless plug now) who was wearing Ariane Zurcher Designs 18 Kt gold earrings with Australian pearls.

For the Aspen Ideas Festival I am wearing my journalist’s hat.  “Come with me and Granma, Em.  She’s going to drop me off.  Do you want to come?”

“Yes, Granma and Mommy and me, go together,” Emma said, pointing to each of us.

“Right, but I have to go to work, so I’m going to get dropped off and then you and Granma will come back up to the ranch, okay?”

“Yes,” Emma said, but she looked sad.  “Mommy has to work,” Emma added.

I love working.  I’m lucky to have writing and design both of which I love.  My ambition is something I have only recently allowed myself to really appreciate or even recognize.  For years I felt the pull of guilt when I went off to work, and while I still do at times feel that familiar tug, I no longer condemn myself for loving what I do.  Loving work does not take away from the love I feel for my children.  It isn’t either/or.  It’s not as though enjoying a career means I do not enjoy and want to also be with my children.

I spent yesterday going to a number of sessions, the first beginning with the inspirational Jane Shaw who is a British Anglican priest and scholar as well as Dean of Grace Cathedral in San Francisco.  She spoke about empathy and asked, “Can we really command someone to love?”  Jane suggested art and poetry are doorways into another’s soul.  I immediately thought of nonverbal Autistic, Amy Sequenzia’s poem, Happy To Be Myself.  Jane spoke about empathy which she described as “a deep responsiveness to that which is different from us.”  I thought of my Autistic friend Ib, whose compassion and empathy is a lesson all humans would do well to learn.  And I thought of Emma.  I thought of my journey from trying desperately to find something that would change Emma’s brain to responding to the little girl who is right in front of me.   A journey that has taken me from striving, to being.

Throughout the day, Jackie texted me photos of Emma.

Emma goes bungee jumping

Emma on top of Aspen Mountain (notice the pose!)

Emma goes bowling

Even when I’m working, I carry both my children in my mind.  I think about them, I wonder what they’re doing.  I hope they’re okay.

“How are we motivated to think about what it’s like to be another person?” Jane asked early in her presentation.  I thought about how for me, it began with tremendous pain, which led me to search, find and finally listen to Autistic adults.

This photograph looking west to the ski area known as Buttermilk, with Highlands to the left was taken from our ranch road when I took Emma out on the 4-wheeler last night.  Or as Emma calls it, “Emma’s red 4-wheeler.”  And she’s right.  It is hers.

Laura Nagle, Vectors of Autism and Other Exciting News

In response to my post – Losing Sleep, Autism and Strange Noises in NYC – I received a great comment (all the comments I get are great) but I’m referring to one specifically.  It was about the Theory of Mind as well as lack of empathy conclusions Simon Baron-Cohen and others like him have made.  The person who is autistic, wrote:  “But we are not being laughed at, dismissed or ignored anymore. People are arguing with us. That means they hear our message and they are aware that it conflicts with what they have been taught. Their confusion will diminish over time. The people who need to be told what to think will always listen to, and agree with, the loudest voices. And our voices are becoming louder. If we perseverate, then we will persevere.”

In keeping with this thought, you must watch this YouTube video –  A preview for the upcoming “Laura Nagle: Vectors of Autism.”

The 50 minute documentary, which this video is a preview to, will be awaiting me when I return to NYC in July.  I will be reviewing it here and for the Huffington Post.  Leah Kelley has been posting about the documentary and Laura for a while now on her blog – 30 Days of Autism.  In this brief preview Laura talks about how quickly she can read, she says, “I’m good at that” (pause and then laughs) “I’m not good at life.”    I won’t say more as I really want everyone reading this post to please take 5 minutes to watch the video, it is wonderful.

I also want to urge all who are as fascinated and disturbed by some of the various “theories” out there about autism as I am, to go over to the blog – Autistic Hoya.  There are so many terrific posts it was difficult to decide which to add links to, but to begin here are two of my favorites (but the whole blog is an education)  The Dangers Of Misrepresentation and The Other Side Of Disclosure.

I will be covering the Aspen Ideas Festival for the Huffington Post from June 27th – July 3rd, unrelated to autism, but still very exciting.  I have no intention of shirking my posting responsibilities here on Emma’s Hope Book, but may be posting on the run as they say, so please forgive typos and seemingly random thoughts.  On second thought you probably won’t even notice as that’s pretty much the norm for me anyway!   I have been asked to cover the icare4autism conference in Jerusalem, July 31st – August 2nd.  I have accepted their generous offer and am very excited!  A quick back story – when Richard and I first heard about Henry Markram and his Intense World Theory for Autism (this link is an in depth scientific paper.  It is not light reading, but if you’re interested, it is very interesting), we read that he would be giving a talk in Jerusalem in August.  At the time, now more than seven months ago, we joked – wouldn’t it be great if we could go to Jerusalem to hear him?  Just over a week ago I received the invitation and learned that this was the conference he will be presenting at!

And finally, I am including two, completely arbitrary and utterly unrelated photos…  just because… well, because I can and I felt like it and they make me smile and maybe they’ll make you smile too.  Please ignore the dust.

Merlin and the Gator

For a little perspective…

Related articles

An Empathic Debunking of the Theory Of Mind

Simon Baron-Cohen, the man who has single-handedly done more damage to the perception of Autistics than any other human being (though there are arguably a number of people vying for that title), depresses me.

I need to say that before continuing.

Simon Baron-Cohen developed the “Theory of Mind” based on the results from the now famous “Sally-Anne” test.  The Sally-Anne test, where the child is shown two dolls, is an example of dubious “science.”  Sally has a basket in front of her, while Anne has a box.  Sally, presumably made to move by an adult, which further complicates the test, puts a marble into her basket and leaves the room.  While she is gone, Anne takes the marble from Sally’s basket and places it in the box.  When Sally returns, the child is asked, “Where will Sally look for the marble?”  Only 20% of the Autistic children were able to correctly answer the question – Sally will look in her basket.

Emma, typically, when asked what one of her doll’s name is, will reply, “Doll” or “girl.”  This is just one example of Emma’s literal mind at work.  She is not wrong, her doll is a doll and yes, she is a girl.  To take away any other conclusion from her answer would be ridiculous.

Yet, from this “test” Simon Baron-Cohen concluded, “that the core problem in autism is the inability to think about other peoples, or one’s own thoughts.”

Except that his test did not take into consideration the level of anxiety, stress or mood of the Autistic participants at the time of testing.  Nor did it take into account the language issues, pronoun challenges or literal thinking many Autists have, which the test inevitably presented.  In addition Simon Baron-Cohen based his theory, which is taken by many as proven fact, on assumptions that the Autistic participants understood the question.  He then set about publicizing his theory, which inadvertently or not, is used by many in the neuromajority to abuse and mistreat the very people whom he categorizes as lacking empathy.  Does anyone else see a problem here?

When Emma was diagnosed I came upon the Theory of Mind paper early on in my research.  I remember thinking that this explained why, when any of us were upset, Emma seemed oblivious.  But as I continued along the road of educating myself, coupled with observing my daughter, I began to question his theory.  I read about Autistics who avoided looking in people’s eyes because it was too intense.  One Autist described it as akin to seeing into a person’s soul.  Other’s talked about how they could sense immediately upon entering a room, the various occupants emotional state and became so overwhelmed they would seek refuge in a corner, try to leave or would stim as a way to counter the intensity of what they were experiencing.

There are times when Emma will, with outstretched arm, put her hand out in front of her face like a shield.  Often it is done, I believe, as a response to the intensity of feelings, either hers or others or both, or as Jessy Park, Clara Claiborne Park’s daughter was quoted as saying, “It’s too good.”   Landon Bryce over on his terrific blog, thAutcast has a wonderful video of an Autistic artist, Tina, who talks about how she trained herself to look into people’s eyes because she paints portraits.  It is a beautiful video, as is she.

What struck me, after reading half a dozen articles and interviews by and with Simon Baron-Cohen, is the damage he is doing.  His most recent book, Zero Degrees of Empathy, (which I am not providing a link for on purpose) where he includes Autistics along with psychopaths and borderline personality disorder as examples of groups who lack empathy will further the suffering of Autistics.  For a man who claims Autists lack empathy, he is bizarrely unaware of his own lack of empathy.

For those who would like to read an opposing theory and one that seems much more in keeping with what I see demonstrated by not only my daughter, but the many Autistics I have had the honor of getting to know, read this interview with Henry Markram.