Friday, December 7, 2012

What is Asperger's? A long answer to a short question. - @Aspienaut - WIRED differently

What is Asperger's? A long answer to a short question. : Aspienaut : WIRED differently

This weeks blogs post has been written in answer to a question I received on Twitter: “@Aspienaut how would YOU describe Asperger’s to a ‘lay’ person? Who has no experience and no knowledge?”

What a great question!  Asperger’s Syndrome is a term used to describe a set of features and traits first categorised by Dr Hans Asperger, hence Asperger’s Syndrome.  It is part of the group of Autism Spectrum Disorders, ASD’s.  It is often referred to as being a mild form of autism.  A lot of the traits are shared across the spectrum of autism.  The degree to which a persons functioning and ability to interact with others and their environment is a determining factor as to where on the spectrum they are.

Asperger’s is not an illness, you do not catch it, you are born with it.  It does appear to be in-part genetic and although autism in all it’s forms has only been categorised since 1943, many historical records and biographies show that there have been people throughout history that have displayed traits of Asperger’s.

The term mild autism, when referring to Asperger’s is problematic. If you have sufficient traits to be given a diagnosis, then there is nothing mild about it.  

The effects of Asperger’s can seem mild because it is a hidden problem.  It is not always obvious to others that a person is on the spectrum.  It is often only by explaining the struggles we have that others can see our Asperger’s.  Within the context of social interaction people are more likely to think that a person with Asperger’s is rude, bored or aloof; over sensitive, being dramatic or attention seeking.  It can also be misdiagnosed as depression, obsessive compulsive disorder, bipolar or schizophrenia.  People with Asperger’s are more susceptible to mental health problems, particularly depression and anxiety.  Addiction problems are not uncommon as Aspies (a term used by much of the ASD community) try and self medicate and dull the sensory sensitivities, anxiety and depression to which they can be susceptible

Asperger’s is often diagnosed by its effects in three main areas of functioning.  These are often referred to as the, ‘Triad of Impairments’ by clinicians and refer to Social Interaction, Social Communication and Social Imagination.  Below is a commonly used description of these issues:

Social Interaction

He or she may:

  • appear to be indifferent to others or socially isolated.
  • be unable to read social cues.
  • behave in what may seem an inappropriate or odd manner.
  • appear to lack empathy,
  • avoid eye contact when under pressure.

Social Communication

He or she may:

  • have difficulty in understanding tone of voice, intonation, or facial expression.
  • make a literal interpretation of figurative or metaphorical speech.
  • find it difficult to hold a two-way conversation.
  • become agitated in response or come across as argumentative or even over-compliant.
  • use formal, stilted or pedantic language.
  • have poor concentration and thus poor listening skills.
  • be honest to the extent of bluntness or rudeness.

Social Imagination

He or she may:

  • have difficulty in foreseeing the consequences of their actions.
  • become extremely anxious because of unexpected events or changes in routine.
  • like set rules, and overreact to other people’s infringement of them.
  • often have particular special interests, which may become obsessions.
  • find it difficult to imagine or empathise with another person’s point of view.

In many descriptions of Asperger’s like the one just given in the, ‘Triad of Impairments’, this is all the information felt to be required to describe Asperger’s Syndrome.  As if terms like, ‘Triad of Impairments’ helps an Aspie or a loved one understand what it’s like.  

In addition to these social issues there are also sensory ones.  An over sensitivity to sensory stimulation through all senses can make the world a difficult and at times overwhelming place.  I would like to explain what this actually means and looks like for the person with Asperger’s.  That way we can understand better what all these quite vague terms actually mean.  I found it difficult to relate to a lot of the text book descriptions of Asperger’s and the, ‘Triad of Impairments’.  Although important, when really trying to understand Asperger’s it is the narrative of the Aspie themselves which shows the reality of the day to day.  

Here is where we really find out what Asperger’s is and means.  The description in a text book is never the thing described.  That can only really come from a person who lives it.  Triad of impairments or triad of abilities?  It all depends on the perspective.  In life we sometimes find out what is regarded as a weakness or a strength depends on the environment in which the measurement is made.  With Asperger’s the key is finding the place where your Aspieness is a strength.  That isn’t easy, I’m still trying at 38.  So in answer to the original question: “@Aspienaut how would YOU describe asperger’s to a ‘lay’ person?”  Like this:

I am me, first and foremost.  I see the world, how I see the world.  I move through the world, how I move through the world.  I interact with people, how I interact with people. Externally this has been problematic at times and for many reasons.  I am on the autistic spectrum, my part of the spectrum as already discussed is Asperger’s syndrome.  When you are given a diagnosis it means that an expert has determined that your functioning in the three areas of the above triad of impairments is significant enough to affect your personal and work life.  Your internal life and your sense of self is also profoundly affected, not that this fact is regarded as diagnostically significant!

To help explain what the social issues in the characteristics of the triad of impairments look like I will use examples from my own life.  These are excepts from my blog and show how the triad combines and is not in isolation and how it can effect the Aspie and social interaction.  The sensory issues are also very significant, as you will see

Excerpt from, ‘Next to you’.

If we meet in a public place where there is some background music and a few people dotted about, lets say a restaurant.  You will be naturally filtering out about 90% of the sensory information that you are being exposed to.  This allows your attention to be on the topic of our meeting.  Let us imagine we work together and we’re discussing a project.  You are focused on the issues at hand. You are keen to get this meeting tied up and move on.  You are looking at me and probably thinking that I’m rude and disinterested as I appear to be distracted and only half listening.  This is because unlike you there is not a lot of filtering happening in my brain.  

As well as trying to look in your eyes and listen to the words you are saying and interpret their meaning there is something else: I hear every conversation in the restaurant at almost the same intensity as our own.  I can hear the fridge behind the bar humming, the light above our table buzzing.  The music on the stereo which is on a loop.  I hear the chef banging his pans in the kitchen.  The burble of the fish tank in the corner.  I notice that the flouresant light flicker slightly. Our table cloth isn’t straight, the knife is from a different set from the the rest of the cutlery.  Your glass has a smudge on it so I’m concerned about the hygiene and what this may tell me about the standard of the cooking here. I can smell parmesan cheese from the table next to us and its overpowering.  You have slightly uneven eyebrows and you’ve missed a hair when you last plucked.  Your pupil of you right eye dilates more than your left and you have a slight pale ring around the iris of your eyes and I suspect from this that you have quite high blood lipids.  I decide not to tell you this, though it worries me.  Your clothes look itchy and make me feel uncomfortable.  Your necklace has worked its way around your neck and no longer sits evenly around your neck but it was when you sat down.  

I have now noticed that the volume of your voice had gone up and I try to workout what that means whilst trying to read your facial expression which I fail to do accurately as you’ll tell me later you were angry at my not giving you the attention you expected given that you are my boss and its an important meeting.  

For you this meeting was crucial and you feel that this type of face to face interaction in important in our work.  You will discover however when we talk again in my office away from quite so many distractions, I have fully understood the work we’re doing.  I have problem solved some issues that no one else was aware of, potentially saving the company thousands.  Yet I still judge myself as having failed because of your feedback  about our meeting in the restaurant.  I tell you about the blood lipids, it doesn’t help!

Excerpt from, ‘Low pitch hum’.

I have always found being around lots of people difficult.  I can’t filter out all the background noise.  It makes it hard to listen to just one person. Instead I get it all at once.

Luckily, the air conditioner was on.  It made a reassuringly low pitch hum.  The pitch varied in tone, giving out a slow rhythm on which I naturally focused.  It anchored me to a place of safety.  It made me want to rock in time to it.  Deep Inside that’s what I did as its sound soothed me.  I wrapped myself up in it.  I just sat back and felt it deep inside.  It was something fundamental; necessary, like air.  

When I don’t have something to hold my attention, there develops in me a sense of unease.  It feels like an electric current being slowly increased.  The current powers, in this case my feet, making them rub together.  This makes me calmer and uses up the energy.  It calms the unease I feel a lot of the time. Rubbing your feet together is a much more socially acceptable thing than rocking, back and forth!  I do on occasion quickly rub my first and second fingers together, but rarely.  

This calmness was shattered when a man, who I didn’t know, sat on the sofa next to me.  

“I hate parties”, he said with a grin.  “I hate the inane talking”.  

I didn’t answer. Though I made the mistake of smiling.  He took that as an invitation to talk to me some more.  

“My names Steve”

“Paul” I said, while reaching out my hand to shake his.  My father had always told me that it was polite to shake hands.  His hand felt weak and damp.  I made a mental note to wash my hands once this conversation was over.

“What do you do then, Paul?” He said my name louder than the other words in the sentence.  I didn’t know what that meant, but I replied anyway.

“A nurse, I’m a psychiatric nurse” He looked at me funny when I said it.

“Good for you, I wouldn’t have the patience!”  One look at him told me that that was probably an accurate assumption on his part.

“I’m in the building trade myself”,  he practically puffed his chest out when he said this.  It was like he felt he had trumped me in some way.  

“Do excuse me,” I said, getting up.

“Sure thing”.

The handshake had been on my mind ever since it had happened.  I made my way through people to get to the men’s toilet.  I opened the door with my foot, careful not to touch the door handle.  I then used a paper towel to turn on the taps.  The water was far from hot but at least there was soap!  How many times had I needed to wash my hands and found find no soap?  I washed my hands carefully.  Turned the taps off with another paper towel.  Then used it to hold the door handle and open the door.  I stopped to throw the paper towel in the bin by the door on my way out.

I had done my bit, I thought.  I had turned up.  I knew he’d seen me but I didn’t want to talk to him.  Even if it was his birthday.  People were gathered around him.  I just didn’t have the energy, so I left.

Excerpt from, ‘The eyes have it’.

We look different, you and me.  I know physically we look different but as an aspie we look at things differently.  This is most true when it comes to faces and particularly eyes.  

Someone I work with asked me the other day, “do you think I’m stupid?”  To which I replied, “No!”  Not because I did and didn’t want to say.  If I did, I would have told her but I really didn’t.  In fact, she is possibly the most intelligent person I have meet for quite some time.  So confusing to me was this question that I couldn’t help but try and work out why she had thought I did.  It turned out that it was because of how I looked at her when she spoke.  The day before she was talking to us as a group.  I was looking at her as she spoke in a way, that to her, she couldn’t make sense of.  Her conclusion, after dwelling on this for sometime was that I thought her stupid.    

Another person I work with recently told me that I ‘really’ look at her in the face and particularly the eyes when she’s talking but not like other people do.  Apparently other people look at you when you’re talking but with a passive intensity.   This puts the person talking at ease and the facial expressions of the person looking are congruent to the subject and to the expressions of the person talking, when the exchange reverses, visa versa.  So within this interaction only occasionally are there problems.  Of late I have had a run of being told that I have been creating little pockets of concern and confusion within the work place.  In the last month I have been told or heard the following about me: I am odd.  I have a blank face.  I give no facial feedback.  People can’t tell what I’m thinking and this worries them.  They think I’m not interested in what they are saying.  That I am rude.  That I am aloof.  That I think they are stupid.  That I am intimidating.  This is not a particularly unusual situation for me and this is a regular experience of many Aspies and also those that spend time with us.

There are many difficulties in being an Aspie but there are many difficulties in just being.  As well as these issues there are many strengths.  I’d like to finish with a excerpt from a post I wrote in response to a young person who had written on a blog that they wished they didn’t have Asperger’s.

When I was younger I hadn’t even heard of Aspergers.  I wasn’t diagnosed until I was 25.  I just knew that I was different.  Other people made me feel like I was wrong in some way for just being me.  My sensory sensitivities and many of the other aspects of having Aspergers made life extra tough.  Having Aspergers is extra tough.  But the important word in that sentence is EXTRA.  By having Aspergers you have something extra.  You have innate capacities for noticing things that just pass others by.  You have the ability to see the world in amazing and novel ways.  Sometimes that extra sensitivity can make life extra hard but sometimes it can make it extra amazing.  

If is wasn’t for Aspies and our extra ways of seeing, society would be a different place.  Many of the advances in Science, Art, and Literature may not have happened without us.  We sometimes have the extra needed to excel and to see further than others.  We notice patterns, we see new ways of doing things.  We can focus for long periods of time and have the capacity for narrow fields of knowledge and expertise.  It is no coincidence that these are some of the talents needed to excel in science and are part of creativity.  Our extra gifts are often a problem when we have to try and fit ourselves into the world of people that don’t think and see the world like we do.  They find it hard that we can be so different.  It makes them uneasy.  Be patient with them.  It really isn’t their fault that they can’t see the way we do.  They struggle to accept difference, and in-turn, to accept us.  This is often why we suffer so, its often not our Asperger’s as such, its other peoples ignorance.  In time you will see just how amazing you are and just what extra things your Aspieness has given you. 

I hope this goes some way to answering the question about what Asperger’s is.  I hope I’ve been able to show some of the implications of having Asperger’s and given you some idea of the day to day experience we go through.  Most of all I hope you can see how, although challenging, seeing the world this way does give us an important view of things.  In the right environment what is often seen as a triad of impairments really can be a triad of abilities.  We must all try and define ourselves within the environment that suits us best.  Socially Aspies can be like fish out of water, but when we’re in the right stream, just watch us swim!

© Paul C Siebenthal Aug 2012

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