When your normalcy gets too big.

NTs who struggle with theory of mind.

Last week I spent a very pleasant and productive two days attending a conference organized by Autism West Midlands and the Autism Awareness Centre. It was very well organized and the content was both interesting and practical. I also had the pleasure of meeting Maureen Bennie, one of the organizers, whom readers may remember from an earlier blog post of mine. My only regret was that I had to leave early to catch my train and so missed the closing presentation, “Understanding My Autism” by John Simpson. 

The headline speaker was Temple Grandin. Having read her books and heard her speak before, I found little that was new in  her presentation. She did make it abundantly clear that she struggled with abstract concepts and had to be able to associate them with visual images or concrete examples. But during questions a few people seemed unble to grasp this and asked questions in very general terms. When Temple asked them to be more specific they continued to speak in generalities.

So much for our neurotypical talent for empathy and theory of mind. It seems to me that we sometimes assume that others share our point of view rather than actually try to see things through their eyes. And when they do not share our point of view we sometimes feel threatened. I have even had one parent ask why I was trying to harm her children because I was critical of chelation! In my mind empathy is about being able to identify with the other and accept difference. Expecting everyone to  share your viewpoint may work most of the time, but it seems less like EMpathy and more like MEpathy to me.

REsearch or MEsearch

To return to the conference, the bulk of the presentations were by Kari Dunn Buron. She has written a booklet, originally titled “When my autism gets too big,” which has been retitled for marketing reasons as “When my worries get too big,” and “The Incredible 5-Point Scale.” I have already found them useful, both for helping students  to identify their emotions and to manage their behaviour, and for helping staff to reframe their attitudes and responses to student behaviour.

At one point during her presentations Kari described how she had organized a year’s sabbatical to visit experts in the various disciplines that were relevant to her work with autistic children and teens. Many of them were totally unfamiliar with each other’s research. For example Nowicki and Duke coined the word dyssemia for the nonverbal social communication deficit described in their book, Helping the Child Who Doesn’t Fit In.  Their Dyssemia Rating Scale describes a lot of the difficulties experienced by autistics. But these guidelines were developed at a time when autism was generally associated with mental retardation. Their first book was published two years before Asperger Disorder was added to the DSM-IV. A child who, inter alia, was often described by other children as dumb, but usually is average or above average in intelligence had a better chance of being identified as dyssemic than autistic, if they were identified at all. Nowicki and Duke closed down their website, Dyssemia Inc in 2006, perhaps after they learned about Asperger Syndrome from Kari Dunn Buron?

From Theory to Practice

Kari also quoted Ami Klin as saying that in autism, educational practice lags behind research by 20 years. I took this as a reference to the dominance of ABA in North America and a hint that it was based on outdated research. But I could be wrong. Kari’s basic message was that

Autism is a disorder of social cognition and problems of social understanding can cause social anxiety which can lead to challenging behaviour.

As a consequence, instead of directly addressing the behaviour, Kari suggests we teach our students skills to help identify and manage their stress by making wise choices. But we cannot expect our students to do that unless we as parents and educators also make wise choices.

The Unwise Choice

“That is wrong! He has to stop! It is my job to make him stop!” This leads to confrontation; time spent in crisis; negative routines. If you are successful the person is controlled but at what cost to him and to you?

The Wise Choice

“Well. that was uncomfortable. He could learn another way. It is my job to teach him.” This leads to teaching time devoted to learning positive routines. The person is empowered and we all do a lot better.

This is cribbed wholesale from one of Kari’s conference handouts.  I like it because Kari is asking us to do exactly what we expect of our students  – to reflect upon  the situation and weigh up our options before we act. We do not always manage it, despite all our advantages in social cognition. Yet we expect our students to do it. This brings me back to the start of the conference when some of Temple’s interlocutor’s failed to understand her but still expected her to read their minds.

I am sure I have made similar mistakes in the past and I expect to make mistakes in the future. Kari enjoins us to learn from our mistakes, to regard problematic behaviour as evidence of a learning difficulty and to use autistic strengths to correct it. While I found Kari’s overall message positive and helpful and respectful of autistic people, I wonder if, from the autistic side, it appears that we NTs are the ones with a disorder of social cognition when it comes to understanding them. Perhaps someone should write a booklet for us, “When my normalcy gets too big,” and give us a 5 point scale.