Tag Archives: autists

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.

A Fantasy For Autistics

Last Monday Emma was profiled in A Slice of Life Series that the blog Thinking Person’s Guide to Autism has been running through the month of April.  This is the blog I wish had been around when Emma was first diagnosed, but that I am so grateful exists NOW, because it is by and for Autists and those who care for them.  Almost all the comments were from Autists who have blogs of their own and I recognized almost every single one of their names.  One of the people who reached out, Savannah, has a terrific blog called, Cracked Mirror in Shalott.  After she commented on this blog, I went to hers and read a powerful post, entitled Payment about teaching life skills to young Autistics.  The first sentence of her post is:  “I don’t want younger Autistics to learn some of the skills I have- or, at least, not the way I learned them.”

I will do her writing a disservice by trying to relate it here, so I urge anyone reading this to go to the link I’ve provided.  I commented on her post and inquired if it would be okay to ask for any thoughts on how to help Emma learn to wash and rinse her hair, which we’ve been working on for close to a year now, with on-again-off-again success.  In reply I received not only a lovely and thoughtful response from Savannah, but another from someone else, who had some terrific suggestions and also has a blog, Chavisory.  As I pondered the various responses I began to formulate a fantasy.  A fantasy of what I would love to see, what I hope I will live long enough to see, a vision of a different sort of world.  A world in which adult Autists were mentoring and helping younger Autists.  A world where adult Autists were involved in every aspect of society, education, government, policy.  I imagined a world where Autistic writers had columns in every major newszine, newspaper and magazine.  A world in which every single school had Autists teaching, devising curriculum, training and teaching neurotypicals how to best teach children on the spectrum and as I allowed this fantasy to develop I felt a surge of energy and excitement.  I literally felt like jumping up and down.  When Richard appeared, bleary-eyed and slowly reached for his cereal bowl, unable to contain my excitement any longer, I blurted out, “Can I tell you about my dream?”

“Can you tell me?” Richard asked, with a dazed expression.

“Yes.  Can I tell you?”  Unable to hold back any longer I launched into my fantasy, while Richard was still forming the words – “Yes, of course. Tell me.”

“Can you imagine what it would be like if adult Autists were writing books, teaching us, training us parents how we could best help our Autistic kids?  Can you imagine how amazing that would be?  Can you imagine how helpful that would be?  Autists have insights that we can’t possibly have, they understand better than anyone the various sensory issues, delays in motor skills that might be making it harder for children like Emma to learn how to do some of these things.  Can you imagine?  Can you imagine a world where schools were created and run for and by Autistics?”

And before Richard could reply I kept going. I was on a roll.  The excitement I felt just thinking about all of this was so great I couldn’t sit down.

“Think about it.  It would be so amazing, unlike anything we’ve ever experienced.”

As I considered this fantasy world I felt the stirrings of determination.  Why does this have to remain a fantasy?  Why can’t this be a reality?  What would have to happen for this to go from far-fetched fantasy to reality?   I’m sure others have had this thought.   What would need to happen?  What are the next steps?  I bet others have begun to make this a reality and if so, I’d love to know about them.

Thoughts?

For my latest piece in the Huffington Post – Running With Mermaids

To read Emma’s profile in The Thinking Person’s Guide to Autism, click ‘here.’

Autism “Awareness” on Huffington Post

The following post has just been published on Huffington Post.  This piece is important to me as it is the introduction to four or five subsequent posts I am planning for the entire month of April, written by autists.   April, for those who may not be aware, is “autism awareness” month.  These autists who will be writing posts for me to submit are the voices that have changed my life.  These are the voices that, because they’ve changed my life are changing my daughter’s life.  These are the voices that are NOT being included in all the fund raisers for “Autism Awareness.”  How can we possibly hope for awareness if autists are not being included?  Please help me by sharing the Huffington Post link (here it is again, in case you missed the first one) through email, facebook, tweets, share it, comment, please, please comment, even if it’s just to say, “I read this” and send the link to as many people as you can.  We need these posts to go viral.  And I need each and every one of you reading this to help me.  Please.

Let’s change what “awareness” means.  With your help we can.

For those interested, this is Paula Durbin-Westby’s blog, one of the autists who has agreed to write the first piece to kick things off for the Huffington Post.

A Different World

To piggy-back on to Richard’s “Shift” post; mine began with a slight tremor in the form of a book.    Autism and Representation Edited by Mark Osteen.   That book opened my eyes to so many things, but most importantly it introduced me to the words, the voices and lives of many adult autists.  After reading Autism and Representation, I started looking for other writings by autists.

While I was doing all of this, my friend, Kelly (I consider her my friend, though we have never actually met, nor spoken) commented on one of my posts with a link.  I went to the link, (written by an autistic adult) couldn’t believe what I was reading, read everything on her blog and began reading all the blog links she listed.  From those links I was introduced to dozens more and finally mustered up the courage to respond to someone’s comment on one particularly controversial post, written by a mom of an autistic child.  For me, someone who was now showing up very, very late to the party, I was fascinated by the comments written by autists much more than the post itself.  Being the compulsive and thoroughly obsessive person that I am, I systematically went through every single comment, madly clicking on each and every person’s link and began reading their blogs.  This was the beginning of what turned out to be the education of a lifetime.  Wow!

One of the links led me to the WrongPlanet where I read the interview with Henry Markram about his Intense World Theory of Autism.  His theory confirmed everything I felt I’ve known about Emma, but that many specialist said wasn’t true.  On the contrary, the common thought about autists is that they lack empathy and therefore feelings.  Finally I was reading something that resonated.  Markram’s theory has opened up another world to me.  I have always known Emma was very intelligent, I have never doubted that, ever.  But his theory of intense feelings and pain memory and how this causes the child to withdraw… well it was like being told you really are seeing what you thought you’d been seeing all these years.

Up until this last week, my fear of what the future held for Emma was something I could not begin to describe.  Everything about her future filled me with terror.  Every birthday marking another year gone by, filled me with trepidation.  Each time we had to teach her to state her correct age, I gulped down massive amounts of fear.  The fear was so great I could do nothing other than tamp it down.  I kept a firm grip on it.  The minute I felt myself sliding into it, I pushed myself back out.  That takes a lot of energy.  It takes up a lot of space.  I didn’t even know I was doing it until I began reading these blogs written by autistic adults.  Adults with a wide variety of issues and challenges.

It’s not as though I read these blogs and thought – oh isn’t it great how cheery and easy everything is for them.  Because it isn’t, far from it.  But somehow, reading about individual lives, feelings, struggles made it less frightening.  Reading the outrage, the cries to be heard, the desire to be respected and treated as such, the ridicule many have endured, the bullying ALL have endured, made it real for me in a way that I could not have anticipated.  And in doing so, the abject, nameless, all encompassing fear I have tried so hard to shove away,  dissipated, because there is this community that is like her, a community of people who understand her, who are fighting with courage, tenacity and determination to be heard.  They are fighting and speaking out, many with the hope that one day Emma and those like Emma who are just being diagnosed now and those yet to be born, won’t have to.  I am profoundly grateful to each and every one of them.  If we want autism awareness, these are the voices that need to be heard.  It is up to us to listen.

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

The Evolution of a Perception

As I wrote yesterday’s post about Emma’s progress in the past year, I realized how much my perceptions and views have changed since beginning this blog.  When Emma was first diagnosed I cycled through a series of emotions fairly quickly.  Some, like guilt, grief and anger hit me with a violence that took my breath away.  Others ebb and flow, while still others, like acceptance, came more gradually, but all of these things continue to change.  My ideas about autism, what that means to Emma and to us have changed.  I no longer believe there is a neuro-typical child named Emma hidden beneath guaze like layers of autism.  A child who, if we could just find the magic thing that would remove the autism, would emerge, intact, speaking in beautifully, articulate sentences, a child who would suddenly converse with us as though all these years had been silent practice for her grand debut.  I do not believe we can extricate Emma from her autism.

I have gone from thinking it was wrong for me to slap such a potent label on her, that it was kinder, gentler, more empathic to say – my daughter has autism – than to use, the more blunt and direct, “she is autistic,” to the question I now find myself continually asking – what would she say, if she could?   I don’t know.  Until she tells me, I cannot know.  But I won’t stop trying to find out.

In my search to understand Emma, I have found voices, and there are dozens and dozens of them out there, autists who, now in their 20’s, 30’s, 40’s and 50’s have blogs where they articulate what many cannot say with spoken language.  These are the so called “high functioning” autists who can communicate, some not verbally, but who have found ways to communicate through typing and other forms of communication.  Their opinions, their voices, often poetic, at times angry, despairing, brutally honest, always insightful, are making themselves heard through their blogs.  Finding these sites has been akin to learning there is a vast alternate universe.  There is so much I did not know, do not know, but want to learn.  Over the course of the past eight years, with the sole intention of helping my daughter, I have done almost every single thing many speak out against.  I didn’t know.  I thought I was fighting for Emma.  I thought my focus on a “cure” was a good thing, the noble thing, the thing that would release her from the bondage of autism.  It never occurred to me that my focus could be perceived as a kind of bondage in and of itself.  By the way, I am not beating myself up over this, or more accurately am trying hard not to, but am doing my best to listen and learn.

I know I’m wading into tricky territory here, with many differing opinions about “cures” and how that word is negatively perceived by those on the spectrum, and I don’t want to get into the semantics of it, only to suggest it is a dialogue that is important.  It is a dialogue I am trying to understand.  I want to understand.  One I hope I am coming to understand.

The abuse, the prejudice, the cruelty all of these austists have endured is staggering.  One of my favorite blogs, by the incredibly talented Julia Bascom, called Just Stimming is filled with such pain.  She writes so beautifully and with such honesty, I read her words and feel overwhelmingly grateful for her voice.  E. is another such voice with her blog, The Third Glance.  Then there’s Landon Bryce, who’s blog ThAutcast is peppered with youtube videos of himself talking.  Provocative,  passionate, he is always interesting and someone I would love to have a conversation with.  There is LOVE-NOS, a group blog with three authors sharing their views and thoughts, one of whom is Julia Bascom. Another group blog, Wrong Planet describes itself as – “a community designed for individuals (and parents/professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences.”

The point is, these sites are educating me in ways I could not have imagined.

Someone named Kathryn commented on another blog:  “Here are two broad categories of parent attitudes about autism. (Others may exist, but these are common and pertinent.)

1. I want my autistic child to function the best he/she can, and will do anything I can to help him/her overcome the difficulties posed in his/her life by autism.

2. I want to have a normal child and will do anything to get rid of this autistic child’s autism, because then I’ll have a normal child again.”

I aspire to be the parent described in #1.

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

Emma during gymnastics last Sunday