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.

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14 thoughts on “When your normalcy gets too big.

  1. An awful lot of people seem to confuse empathy with projection which is almost amusing since the two are practically opposites. Empathy is the ability to put yourself in someone else’s shoes; it’s actually poorly developed in most adults (to the extent that people who are good at it really stand out), and, it seems from some recent research, hardly developed at all prior to late adolescence. Projection, on the other hand, is the extremely prevalent and overdeveloped ability to put other people in your shoes; to assume that their experiences and motivations and circumstances are the same as yours and to deem their behavior “good” if it corresponds to what you would do. Empathy asks “what could I do in his/her circumstances?”; projection asks “what would he/she do if he/she were me?”

  2. Thanks so much for this summary of the conference and the mention of Kari Dunn Buron’s research. The descriptions of the “wise choice” and of the “unwise choice” illustrate the way we have changed in thinking about how to address my son’s “challenges” (and I would do well to consider them for my own, indeed).

  3. Hi ebohlman
    You said
    Empathy asks “what could I do in his/her circumstances?”; projection asks “what would he/she do if he/she were me?”

    I wonder also about the interpretation of the circunstances- and how much interest to know about the whole familiar/individual experience- is not also part of the overall issue, not only what to do/not to do.

  4. Ah, normalcy. Mine won’t ever get too big, thank goodness!

    I think that very few people have any idea what empathy is truly all about. I personally like the “empath” definition you find in fantasy and science fiction, as it comes closest to my own experience; empaths feel what other people are feeling as though those emotions were their own.

    Seems that perhaps the scientists could learn something from the novelists in this case…

  5. But I have studied semiotics, how can I be dyssemic?

    I could assert and dissert, notwithstanding not desert that which has its desserts in the broadcast dissemination of my seminal finding on this subject. A pretty pudding that would make too.

    Well that is another root or route than “semion” and if I disseminate too much I will go blind :)

    Essentially it all goes back to context, as I heard Theo Peeters describe at a recent bash in the West Midlands organised by a more competent outfit than the purveyors of that almightily expensive conference that you went to, that I a poor student of autism could not afford to attend.

    Still as you imply, if you’ve heard Temple Grandin once, you have heard her a thousand times :)

    The word by the way is “normality” :- wherever did you pick up that corrupt US derivative and distortion “normalcy”? Not from your native education I would hope.

  6. Well a nickel and a dime are perfectly respectable US coinage too, but just try spending them over here :)

    You can have literacy and piracy, but normalcy no it just grates on my sensibilities.

  7. “An awful lot of people seem to confuse empathy with projection which is almost amusing since the two are practically opposites.”

    Bless you! Such an elegant description of a concept I’ve been musing about for years. My variant, which is pretty much what Mike is saying is that ToM crosses cultural boundaries with difficulty and neurological boundaries almost never. Paradoxically, the ones who are supposed to have ToM and loads of empathy are constrained by their social acculturation. They may have a version of empathy, but the range is small. Case in point – the audience at Temple Grandin’s presentation.

    Your gem is going into my quotes file – with attribution of course.

  8. The true cause of autism of the serious, non-functional kind, is an older father at the time of conception. A history of autoimmune disorders, OCD, ADHD, autism, schizophrenia and a mother who had an older father at her birth are other risk factors. There is a male biological clock and the increase in genetic disorders is due to not knowing about it.

    http://autism-prevention.blogspot.com/

  9. Anyone remember being taught as a child “do unto others as you would like them to do unto you”? It’s a classic example of “empathy via assumption”.

    I can remember one day my mother (or possibly my father) told me that the “do unto others” instruction wasn’t quite right. It should really be “do unto others as they would like to be done unto”. That is, you can’t neessarily assume someone’s feelings and needs from your own feelings and needs. That gave me a lot to think about and was a really useful model.

    Admittedly, it isn’t always easy to know what someone else needs or wants, but it helps keep me more open to others when I remember that one size doesn’t fit all.

  10. The only really valid ‘normal’ is an ipsative one: the minute that a person ceases to behave as they usually do, that’s the time to become concerned.

    There is no other ‘normal’ that has any sort of revelance in educational settings (or, as far as I’m concerned, in any settings). I speak as one who uses (and occasionally has to develop) tests as a psychologist.

    I like the post, Mike. Kind of shows where the true ToM deficit really is, doesn’t it?

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