Category Archives: Simon Baron-Cohen

Losing Sleep, Autism and Strange Noises in New York City

I’m operating on about three hours of sleep.  The piece I rewrote about Simon Baron-Cohen and The Theory Of Mind for the Huffington Post was published yesterday evening.  I knew I’d get some opposing views.  I’m used to that.  I understand that by putting my thoughts out there,  people will and do disagree.  So irritating when people disagree with me.  Eye roll, sharp intake of breath.

When I began writing at the Huffington Post I submitted a piece about Emma and her interesting use of language.  It was not a scholarly piece, (none of my pieces are, it’s not what I write)  just some observations and thoughts I had.  Once the piece was published I received a couple of scathing comments, many of which were marked as “abusive” and were removed, but one that remains, was from a retired speech pathologist who wrote,  “A jewelry designer (author of the article) who has bizarre ideas about language development should be countered by an expert opinion.”   I imagined as she wrote that comment she was looking grim and making tsking sounds.  I felt as though I were back in first grade being scolded for not paying attention.

Another piece I submitted about Emma’s painting, a number of people made derogatory comments, which were removed.  One of those comments was,  (I’m paraphrasing here) Oh great!  Stupid references to Dr. Seuss, Autism and painting all in one sentence.  How is this news?  

News?  I was supposed to write a journalistic, investigative piece?  Shit!  Where was I when that memo got sent?   I thought I was writing a piece about the joy I felt watching my daughter paint.

It’s anxiety causing to get such contemptuous responses, but over the years I’ve developed a “thicker skin” though I’m so literal-minded that phrase strikes me as really creepy.  Still, in this last piece it is I who am attacking someone else.  And while I’m sure Simon Baron-Cohen wouldn’t lose any sleep were he made aware of my rant about his questionable test and the even more questionable conclusions he’s drawn, it’s not in my nature to attack others.  I don’t feel comfortable doing it.  Against my better judgement I submitted the piece anyway because I believe strongly in its message.

As I reiterated in a comment I made to another person’s response –  SBC  is presenting himself as an “expert” on autism. It isn’t as though he was the parent of an Autistic child, had a blog and wrote the occasional piece for the Huffington Post, while making inflammatory statements, which everyone could read, laugh, argue with and forget. He has made a career for himself, based on his academic achievements. His theories should and must be held to a higher standard. His words and ideas have tremendous power. It is irresponsible to be in such a position of power while basing ideas and theories on faulty tests with no consideration of the implications. I, too, could cite many examples of my daughter’s actions, which could then be used to (erroneously) support SBC’s various theories. That doesn’t make his theory correct, it brings into question my thinking.  I urge you to read Dr. Henry Markram’s alternate theory – http://www.wrongplanet.net/article419.html – I can find many more examples of Emma’s behaviors, which support his theory. The TOM theory is a dangerous one because of the way it can be used to justify the negative perceptions of Autistics. If someone has little or no empathy, we are much more likely to behave in a less caring manner toward them. We may insist this isn’t so, but there have been studies suggesting otherwise.”

As a result of all this I’ve paid the price by getting very little sleep.  Ask me about the traffic patterns on 7th Avenue between the hours of 2 and 4.  And exactly what was going on with that woman who kept shouting WooWoo at around 3:30AM?  Was she celebrating?  In the beginning stages of labor?  These are the questions plaguing me at the moment.

Emma making her silly face, which pretty much sums up how I’m feeling at the moment.

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.

I Got To Meet A Unicorn Named Ibby

Celebrities and important people populate New York City in the same way Starbucks does, in other words, look hard enough and you’ll find one on every street corner.  But Sunday I had an encounter that was more impressive than running into a dozen A list celebs.  Sunday I met Ibby Grace.

Ibby, also known by her professional name, Dr. Elizabeth J. Grace,  Assistant Professor at National Louis University, is a terrific public speaker, wonderfully sarcastic, understands irony and rhetoric, has a sense of humor and is an extremely kind and compassionate human being, in a long standing relationship, a new mom to twins, and is Autistic.   If you believe the common assumptions about Autistics, Ibby is an anomaly.  According to the current “statistics” citing 1 in 4 Autistics diagnosed are girls, Ibby is even more unusual.  That she also displays qualities thought to be nonexistent in all Autists makes her, as she suggested with a certain degree of sarcasm, “a unicorn” or as a participant volunteered, “pegasus.”

Ibby spoke Sunday at the 12th Annual International Conference on Disability Studies in Education on Autistic and Female:  They say that’s rare, and so many other things.  She proceeded to dispel the many myths surrounding the little known and misunderstood segment of the human population – The Autistic Female.  In her talk she mentioned various theories including Simon Baron-Cohen, the creator of possibly the single most destructive theories regarding autism, The Theory of Mind and Mindblindness, which postulates that Autists are unable to empathize and his latest theory – The Extreme Male Brain.  I will not do Ibby’s talk justice by trying to represent it here.  Suffice it to say, you should have been there.

After the talk I stayed and chatted with a number of people.  As  Ibby and I walked together I told her how thrilled I was to meet her and other Autistic women who were beating a path, a path my own daughter may choose to one day walk down.  “You’ve found her people,” Ibby laughed.  I have and a formidable group of women it is.  Then she put her hand out and said, “Welcome to the tribe.”  The gloom and doom and horror I have grown used to feeling whenever I have attended any group discussion regarding anything to do with autism was in stark contrast to the joy I felt attending Ibby’s talk.  I think I may even try to go to other Autism conferences as long as most of the speakers are Autistic.

Ibby makes me happy.  She is interesting, smart, articulate, funny, doing what she loves and is one of those people who lights up the room.  It’s just the way she is.  Were it not for deeply ingrained societal restraints I would have physically jumped up and down upon meeting her I was so excited.  I think I did bounce a little on my toes when I went up to her after the talk had ended.

But I don’t think anyone noticed.

*An addendum to Sleepovers, Staycations, Sixteen Hours and Other Words Beginning With the Letter S – it turns out Oliver and Trouble are the names of Angelica and Joe’s two cats.  Mystery solved!  I should never question Emma.  She is always right.  I have to learn how to listen to what she’s saying better.

My latest piece My Fear Toolkit published in the Huffington Post

Feelings

Emma’s friend, Charlie was upset yesterday.  No one knew what was wrong or why he was so sad.  However Emma went over to Charlie and comforted him.  These are the kinds of things parents are always pleased to hear.  As our children grow older, we come to expect such displays of empathy, even questioning our children when they do not respond this way.

In 1985 Simon Baron-Cohen developed a theory he called mindblindness, suggesting that children with autism have an impaired ability to make sense of others and their own feelings.  He has since amended mindblindness to E-S theory (empathizing-systemizing theory.)  Many people, when confronted with an autistic person’s inability to acknowledge or respond appropriately to their emotional state, assume that person does not care.

Before Emma was diagnosed, I learned of a friend’s death and was crying.  Nic ran over and immediately asked what was wrong and why was I crying, while Emma continued to look at a book.  At the time I thought she was more interested in her book or perhaps didn’t notice I was upset, but I remember feeling a certain uneasiness about, what I believed was, her lack of empathy.  As I have read more about autism and the problems in reading people’s emotions, I see her non-responsiveness as an inability to make sense of  my emotional state rather than indifference.  As Emma grows older, she has become increasingly curious about emotions of all kinds.

“Rip Good Night Moon, make Becky angry.  No you cannot rip Good Night Moon!”  Emma has said, referring to something that happened well over a year ago at her school.  One of Emma’s favorite books is “The Way I Feel.”   A book describing emotions with illustrations reflecting those feelings.  When Emma’s brother Nic is upset Emma, much to Nic’s annoyance, will attempt to make sense of Nic’s upset. “Nicky’s crying.  Nicky wants to go on the carousel,” Emma will say.  Or “Nicky’s angry.  Nicky doesn’t want to go to bed.”  Emma will apply her own reasons for being sad or angry with things that make her feel those things and becomes confused when we explain that Nic is upset or angry about something entirely different.  Still, she is doing her best to make sense of what she is seeing.  She will almost always try to comfort Nic, even if she has come to incorrect conclusions regarding the reasons for his feelings.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book