Neurodiversity

“Impaired” Theory of Whose Mind (ToWM)?

According to most scientific literature, an impaired Theory of Mind (ToM) is a core component of autism.  In his 2001 paper Theory of mind in normal development and autism, Professor Simon Baron-Cohen explains his view of ToM impairment and its implications for autistic people:

“A theory of mind remains one of the quintessential abilities that makes us human (Whiten, 1993).  By theory of mind we mean being able to infer the full range of mental states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action.  In brief, having a theory of mind is to be able to reflect on the contents of one’s own and other’s minds.  Difficulty in understanding other minds is a core cognitive feature of autism spectrum conditions.  The theory of mind difficulties seem to be universal among such individuals.” (Baron-Cohen, 3)

Every time I read this paragraph, my mind boggles at the dissonance between a) Professor Baron-Cohen’s view of autistic people and b) the profound diversity of experience of people on the spectrum.  Let’s parse it one step at a time:

1. Having a normal ToM means the ability to reflect upon another person’s beliefs, desires, intentions, imagination, emotions, and other mental states.

I don’t remember a time when I didn’t reflect upon the mental states of other people.  I have close friendships of many years duration with neuro-typical men and women.  I have a wonderful marriage to a neuro-typical man, and I’m raising a well-adjusted neuro-typical daughter.  I am fully aware that other people think differently than I do, sometimes painfully so.  Therefore, I must have a “normal” ToM.

But I also have an AS diagnosis.  Interesting.

2. Autistic people seem to have a universal difficulty with ToM abilities.

Uh oh.  I must be really odd.  I’m able to reflect upon the minds of others.  Apparently, no other autistic person can match this feat.  Just call me a lone ranger on the neurological spectrum.

3. Having a normal ToM is one of the core components of being a human being.

Oh, my.  If you prick us, do we not bleed?  Apparently not.

Now, I will readily admit that I cannot infer a person’s mental state by reading nonverbal cues.  And while I can reflect endlessly upon the mental processes of neuro-typical people, I find certain of their characteristics unfathomable.  Why do people enjoy socializing?  What do they get out of it?  Why are most people put off by discussion about serious matters?  I haven’t a clue.

But let’s turn the tables for a moment.  Let’s look at how unfathomable autistic people seem to the vast majority of neuro-typical folk.  For many decades, scientists had no ToM regarding the mental processes of an autistic person.  Guess how they found out?  An autistic person wrote about it.  She put it into words.  She had to, because your average human being could not infer the mental state of an autistic person by translating his or her nonverbal cues.  As Oliver Sacks wrote:

“In 1986, a quite extraordinary, unprecedented and, in a way, unthinkable book was published, Temple Grandin’s Emergence: Labeled Autistic. Unprecedented because there had never before been an ‘inside narrative’ of autism; unthinkable because it had been medical dogma for forty years or more that there was no ‘inside,’ no inner life, in the autistic … extraordinary because of its extreme (and strange) directness and clarity.  Temple Grandin’s voice came from a place which had never had a voice … and she spoke not only for herself, but for thousands of others …” (quoted on www.templegrandin.com)

Wow.  Temple Grandin wrote a book and the scientific community had a collective epiphany:  “Eureka!  We used to think autistic children were just empty shells!  What a revelation!”

Who had the imperfect ToM for all those years?  Who needed the nonverbal cues to be verbalized and explained?  Who was mind-blind?  It wasn’t just us.

So why do we on the autism side of the neurological spectrum get stuck with the label of having an impaired ToM?

And why are people on the neuro-typical side of the spectrum considered to have an unimpaired ToM, despite the fact that, prior to 1986, most folks had no idea that autistic people have an interior life?

The problem, of course, is that the scientific community has dubbed its own (neuro-typical) way of thinking “normal” and the autistic way of thinking “abnormal.”  Thus, scientists have insisted upon interpreting an autistic person’s behavior the way they would interpret their own behavior.

For example, most doctors would consider an autistic person who does not speak in words to be “low functioning.”  But what if the person were having a conversation without words?  What if the person were using his or her sense of smell, taste, touch, sound, and sight to have a two-way interaction with his or her environment, an interaction that signals a vivid awareness of the richness and diversity of the sensory world?  What if the person speaks through drawings, or paintings, or music?  If an outside observer fails to properly read and interpret the signals that an autistic person provides, who has the impairment—the neuro-typical person or the autistic person?

My answer would be, “Neither.”  One can only use the word “impairment” if one accepts the categories of “normal” and “abnormal.”

My hope is that the conversation will evolve past these notions and toward an appreciation of neurodiversity in all its forms.

Rachel Cohen-Rottenberg blogs at Journeys with Autism.   “Impaired” Theory of Whose Mind (ToWM)? appears here under the terms of this Creative Commons License.

Rachel Cohen-Rottenberg’s memoir is The Uncharted Path: My Journey with Late-Diagnosed Autism.

[image:  Wooden Chairs, Rachel Cohen-Rottenberg]

Rachel Cohen-Rottenberg on 11/18/10 in featured, Politics | 5 Comments | Read More