Tuesday, November 1, 2011

He doesn’t look like he has Aspergers

Randy Brachman on Randy Speaks has written this:

The article that was supposed to be published for Autism Awareness Month:

He doesn’t look like he has Aspergers

When I was a child my dad always referred to me as ‘professor’.  “Professor, clean your room.”  “How was school, Professor?”  I didn’t know why.

When I was 57, my wife told me that her friend thought I had Asperger’s Syndrome.  I hadn’t heard of Aspergers.  I studied it day and night for weeks, and then I had a neuropsychologist confirm it.HansAsperger, who first identified the syndrome, said the kids he studied were like “little professors.”

In between, I led what seemed to me to be an ordinary life:  Career, two marriages, daughter, granddaughters, retirement, and hobbies;  except, in a million ways, I wasn’t like anyone else.

Although I didn’t know it at the time, I spent my entire life trying to learn the rules for behavior that most seem to know intuitively.  In fact, somewhere along the way I found I had to follow the rules I knew. Lying is nearly impossible.  It makes me totally nuts when someone doesn’t follow the rules, whether they be the rules of criminal law or a card game.  But following the rules keeps me looking pretty normal.

Ask me about my life, and I will usually talk, like most people, about relationships with family and friends, spouses and children.  But actually, I don’t think of relationships as the measure of my life.  For many years, I told people, “I hate people.”  That always got a laugh.  I think I even thought it was funny.  But only because it was true.  People are a problem.  Not just the clerk or the customer service operator or the driver who didn’t signal, but also my mother, my wife, my daughter, my brothers, my sister.  Also the friends I have had, though they were few and far between. All people are a problem.

Interacting with another human being is just hard.  Experts say this is because those on the autism spectrum can’t read body language or have face blindness or just are not able to communicate effectively in social situations.  For me, however, the truth is that when interactions lead to unpleasant experiences often enough, you must avoid them or somehow learn what the rules are.  But the rules are unclear and they change based on who and where and when and a dozen other variables.  Most people don’t even seem aware of the rules, and just interact without concern.  When they occasionally cross a line, they can implement a different set of behaviors to undo the damage.

When I am in the presence of another person, my mind goes into high gear.  I am trying to watch and listen for anything that seems … wrong.  Out of context. Unexpected.  A red face may be okay, after a day on the beach or a few drinks or some physical activity.  A loud voice is OK in a noisy bar, or to make a point, or from across the room.  A loud-voiced red-faced person may be any combination of those.  Or it may be someone who is about to hit you or maybe a person in distress trying to get your attention or maybe something else.

Now go to a small party with 10 people, each with 10 or 20 or more behaviors to be watched and calculated and my anxiety level raises and maybe a drink helps calm that but makes me less able to do all that calculating and … I’d rather be home alone.

In fact, that is the journey:  Learning the rules of behavior of a foreign culture.  Each day you get a little better.  Each mistake teaches you a little more.  Your foreign accent fades a tiny bit.  You are better integrated into the NT (neurotypical) culture, but it will always be a foreign country.  The language in NT land is always a second language, the customs still strange.

So how can I describe this life in my terms?  It is not about relationships.  It’s about who I am and what I know and how I think.  It’s inside my head.  That’s where I live.  It’s those conversations I have with myself every waking second.  It is all the thoughts I would talk about if someone were listening.  It’s the awareness of the parts and pieces that make up the universe, and a lot more. All together.  All the time.  Perhaps everyone has dozens of thoughts at once.  Nobody I know seems aware of them all at once.

Another feature of life for me is the desire – the need even – to focus my attention on a single thing.  For me it is usually a hobby (scuba-diving, flying lessons, radio controlled model cars, paragliding, golfing, etc.).  When involved, I am immersed in my subject, absorbing all I can, sometimes 15 or 20 hours straight, sleeping a bit and starting again.  That focus allows me to learn more than most.  It’s hell on any life outside of that focus.  My interest can stop as suddenly as it starts, weeks or months or years later.  Then I can be more engaged with the world for awhile.

Since being officially ‘diagnosed’, I have been more aware of how I differ from the average guy.  For example, I was surprised to find out that I have no storage of faces in my memory. I know people from their voice and context and activity and conversation.  If I close my eyes, there are no faces.  I didn’t know that before.  Also, I now see why I turned down jobs that required supervising others and I see why I prefer text messages to voice calls.  I get why I love computers.  I always know what to expect from them. 
Luckily my wife knows what to expect from the rest of the world and keeps me out of harm’s way, mostly.

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