Category Archives: empathy

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.