Friday, August 24, 2012

How Asperger's Sydrome was explained to me

My son was one of the first people diagnosed with Asperger's Syndrome when it was first added to DSM IV in 1995.  At the time, this is how the psychiatrist, who was affiliated with a teaching hospital, explained it to me.

We are supposed to be born with an invisible antenna should allow us to interpret facial expressions, gestures and tones of voice instinctively and give them meaning.  The person with Aspeger's Syndrome is missing this antenna or it is damaged.

90% of communication between people is nonverbal.  People with Asperger's Syndrome miss most of that 90%.

Infants, before they are speaking verbally, are learning this non-verbal communication.  They learn, for instance, that, if they smile, mom smiles back.  If they cry, mom looks concerned.  If they poop, maybe mom looks disgusted. 

As a result of theses observations, infants begin to shape a mental model of what other people are like.  They come to understand that other people have an internal process that is responsive to the infant.

The child with Asperger's Syndrome never gets this early development. 

By that time, my son was 5.  The psychiatrist told us that his understanding of other people was still that of an infant, i.e. other people are here to serve me, e.g. Mom brings me food.  I certainly noticed that even a few years later that my son said that he felt that people were nice or were his friend if they did what he told them to do.

He could not notice the little signals that would lead up to someone getting very angry.  He would notice if someone was mad enough to turn red and scream, but not the subtleties leading up to that.  He still, at age 21, has a hard time visualizing how he contributes to someone else becoming furious at him; and especially has a hard time conforming his behavior to someone else's desires.

One of my greatest fears is that he might end up in a conversation with a police officer where he might be told, for instance, to put his hands up -- and he would refuse or delay -- resulting in getting shot.  He just is not able to conform his behavior to the desires of others, or understand when conforming might be important or urgent.

He did have a very good therapist as a child who did mitigate this somewhat.  She played role playing games with him where his little doll would do something nasty to her little doll and her little doll would say "I don't like this.  This makes me feel bad."  She would do that over and over, ad nauseum.  I'm not sure how much sank in.

What seemed to help him more was when he got into special ed and a wonderful school psychologist taught him interpersonal relationships as a course with a curriculum of points he could learn intellectually. 

Another thing that comes from not being able to engage in the constant, instinctive, nonverbal banter that links neurotypical people is an extreme attachment to objects and routines.  For instance, when we rearranged furniture in the dining room when my son was 3 because we were having guests, he became hysterical and had to be shut in his room for most of the evening, screaming.  Even now, when he travels, he has to have 5 suitcases with him, even for a 5 day trip -- and he dislikes travel a great deal, because of the disruption to his routine  Fortunately, he is a strong young man who can carry a lot

He does have sensory integration issues, for instance extreme sensitivities to tastes and textures, which give him problems in the presence of various foods.  Fortunately some of that seems to be fading now that he is 21.  My understanding, though, is that these sensory integration issues are not considered central to Asperger's, but are in fact a comorbid disorder.

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