Archive for Mind-Blindness

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.

© 2009 by Rachel Cohen-Rottenberg

Feeling Sadness About Having AS

I’ve noticed in the past week that I don’t have a lot of energy for relating to people outside my family. It may simply be that it’s January in New England and my energy is low, but this lassitude seems related to having Asperger’s Syndrome, so I thought I’d share my feelings.

Now that I have a diagnosis, I am hyper-aware of what an effort it takes for me to enter into an exchange with another person. I feel myself pulling energy up from deep inside. I’ve been working hard at communication all my life, but now I notice how much it takes out of me. A part of me is saying, “Don’t bother trying to connect. Just settle in, hibernate, and keep conversation to a minimum.” This feeling is in very sharp contrast to how I usually feel about going to my volunteer work and running errands. I usually look forward to being around people. I have a lot of good energy to give and I generally enjoy sharing it.

So why do I feel this way right now?

For one thing, I’m conscious of the cost. I know that when I get home, my mind and body will be very tired.

For another, I’m conscious of my blindness to nonverbal communication, and this blindness saddens me. The people I work with at the store are wonderful. They’re interesting, funny, kind, non-conformist, and welcoming. I can see those qualities quite clearly, but I’m aware of how much I can’t see. I’m aware of how much is being communicated by body language and facial expression that I’m missing. I wish I could connect in the same way.

But instead, I have only words. I have plenty of them, and I used to think that was enough. It doesn’t feel that way right now. Right now, I feel very limited.

Last week, I said to my husband that I’m enjoying people much more these days because I don’t expect them to be my friends. I know it sounds cynical, but I don’t feel cynical about it. In fact, I feel a kind of detachment and acceptance that I’ve been searching for all my life. I have my close friends, and as I look back, these friends weren’t people I sought out. I just happened upon them, and we clicked. So if I happen upon another friend, all well and good, but it’s easier on everyone if I don’t expect it. That way, people don’t disappoint me, and I don’t resent them. It’s good to be moving on from that paradigm.

So, when I’m feeling good, I’m very happy letting people be themselves and enjoying them for who they are. When I’m feeling low, I feel very insufficient. At the moment, I wish I had a blind man’s cane when I enter the social world so that people would know that I can’t see what’s right in front of me. The fact that this disability is invisible is very difficult.

But being a practical person, I must have a plan. So tonight, I sent an email to an AS-literate therapist, asking whether she knows any therapists in my area who could provide emotional support. I’ve learned that my last therapist, who does not know very much about AS, would not be helpful about the issues I’m facing. I miss having someone to go to for support and guidance, so it’s time to set out and find a good counselor.

I’m also going to contact an occupational therapist about an hour from my home. I need to get a sensory assessment and begin some sensory integration work. Because of the winter storms, I’ve been putting it off, but I need to make the appointment and hope for decent weather.

And I must remember: we are in the dead of winter here in New England. I will feel much better when I can see the earth under my feet.

© 2009 by Rachel Cohen-Rottenberg