Friday, August 05, 2016

Are you a doctor Mr. Wady? The ethics of aspie 'outing'.

August 5th 2016, the day before I travel to perform at the Edinburgh Fringe Festival for three weeks.

Recently I broke a cardinal rule of mine.  I publically outed someone.  Last time I did that the woman involved ended up bringing a show to the Edinburgh Festival about it.  True. 

After the long list I gave of autistic properties that I felt my target possessed, I was asked whether I was a doctor?  The question implied either, did you train at length in a proper medical frame of reference to know what you are talking about, and/or that only such people could make such lengthy judgments.  It does not take into account Asdar, autistic gaydar.  Or that aspies know aspies.  That because we have empathy for our own kind, we know them when we see and experience them.

Making a diagnosis of neurodiversity is usually broken down into elements like ADHD, OCD, PDA and lots of other specific properties.  As an aspie I just see it all as the ordinary and varying properties of an aspie.  Its neurodiversity – everything else is the individual.  Simple.  Actually this week I filmed two experts making a training film in which people where discussed by them property by property to see whether they fitted the profile or not? 

So what have I done apart from be born one?  I have read the books over the years.  (Regular daily access to Nas library helped in the first few years I tell you).  I have read the papers and worst of all I have looked at the dreaded internet.  The home of authority that needs nothing behind it.  Like this blog?  No wonder the anti vaccine movement lives there. 

I think that to all the other kinds of conspiracy theorists as well, the electronic medium of written information that can be accessed (and edited) anywhere in the world is more than a blessing.  It is the perfect base of authoritative expression.  No more soap box standing or long conversations in pubs.  Now you just type it all in and it sits there.  Brilliant.

So…what’s the difference between that and what I wrote?  Simple.  I have spent nearly 12 years diagnosed and over 10 in a relationship and married to another autistic person.  By my 53rd birthday I will have met more autistic people than I can recall. I had a purpose in doing that too.  Before I was an aspie I was a Buddhist, spending all of my 30’s in the same movement.  For me it was all about self awareness.  Meditation retreats (30 over 10 years, from weekenders to two weekers and the buddhafield retreats and festivals on top.  I loved the cold harsh light of stripped down self awareness). 

On the 24th May 2016 I spoke for the Royal College of GP’s at a meeting in Edgbaston, Birmingham.  I can provide the PowerPoint presentation I wrote for them.  I became one of many autistic people who have had the privilege of training doctors. 

I do this kind of thing all the time for my day job with the National Autistic Society, running around the UK making presentations as part of a bigger training day.  But that is not why I assume any authority in making the diagnosis I initially referred to.

For five years, we had an autism rights group based in London.  I was closely involved with it on and off, witnessing both its formation and its ultimate disintegration.  Four men came to rule it absolutely to a degree that would have made Stalin feel like a considerate man to his old friends, or Mao rather inclusive of the opinions of non communists.  You literally could not speak during meetings unless it was on the monthly agendas.  People would turn up and say nothing all meeting.  No slot allocated you see?  You could be just as brutally shut down. 

Eventually the four dictators turned on each other and over the course of two months, two of them expelled the other two.  One each month.  Years before I emailed that it was getting ridiculous and wanted nothing to do with it.  The reply from one dictator was…WE HAVE THE POWER TO VETO YOUR RESIGNATION.  WE WILL SUSPEND YOU INSTEAD.

There then followed a macabre series of meetings, some of which were held between one or two individuals and noted in the comprehensive and detailed minutes as ‘secret’ or private.  These were not young men by the way?  One had a family and ex partner.  Some were older than I was.  Finally a huge letter arrived with a 1p stamp on it.  I had to get it from the postal depot.  I had no idea what was going on by then as I was too busy either laughing about it or avoiding it all.

Inside the huge A4 envelope was a big document, carrying various macabre charges.  I still have it somewhere.  I showed it to people to great comic effect.  I should take it to parties?  Anyhow, my point here is that if there is one kind of personality I can relate to, it is the Super High Functioner.  That is, autistic people who don't look sound and act like we are supposed to (Rain Man.  Maths savants who cannot go into public places without having screaming meltdowns etcetera).

I had an autistic father who embodied quite a few of the characteristics I detail below so I know the behaviors.  Hell, I spend my life trying not to be like that myself. 

The four dictators could be characterized thus:

  • ·      Nice guy but really obsessed with a left wing communist organization and prone to lines like WE ARE NOT A POLITICAL ORGANIZATION BUT WE MUST PROTEST ABOUT THIS AWFUL COALITION GOVERNMENT. 
  • ·      Manic.  A man who would spend the entire meeting on minutes arising from the previous ones if unchecked.  All of it.  Prone to literally screaming and shouting if something was not done properly or a point made incorrectly.  A man with an attention to detail that was not humanly feasible to maintain.  In his 40’s and devoutly religious.  
  • ·      An alcoholic in some sort of bizarre and quite brilliant world of his own in which was a CEO, a Political and Campaigning person, A Support Worker and a great savior of the autistic world rolled into one.  Described to me as employing Stalinist tactics where you eliminated people how had helped you get to where you wanted to go, once they where of no further use.  Had the advantage of alcoholic delusion where you believe that what you decide is real, is.  Charismatic and very well read too.
  • ·    Always right.  A very intelligent and educated man who if the books said one thing and he remembered another, knew which was right.  He would literally ignore screaming and shouting at him if he was certain he was right.  Years before in one situation where he met with other autistic people, someone hit him in the face because he was so intractable.  Could only be right.  Often incoherent because he spoke from his own perspective all the time.

People would only last a few meetings before they either left or stayed on as minions.  Really.  Those small dinky yellow creatures?  More or less what you had.  There was always a small crew of such people going along with whatever the gang of four got up to.  I often wonder what they had to say later on about it, but attempts to get sense out of them usually fail.  They just sort of smile and say it was all a long time ago now.  Nice harmless aspie folk. 

This then is my specialty corner of the spectrum.  The folks who don't live and behave as if they are restrained by having stereotypical neurodiverse natures.  People who never get any kind of formal diagnosis and look after themselves, and sometimes others so well, that they never get noticed as being neurodiverse.  Odd, eccentric, brilliant, criminal, problematic and even dangerous yes?  Hiding behind addiction, depression and mental health issues yes.  But not regarded as being autistic. 

Now, if you where involved in the online exchange I was initially discussing, do you see anything familiar here? 

What good does it do to out someone?  To make sense and explain someone’s personality and characteristics?  Well I think the more of us actually know what we are the better.  However, public outing is problematic.  In fact it may be disastrous in the personal work and living scenario closet aspies may have been forced to construct to survive.  Also there is the matter of not having the individuals permission? Someone’s nature is a private business and I for one should not feel I can go around doing things like that to people. 

So should I be going around doing this?  No, and I conceded I may be wrong in the example I started this blog discussing.  However, my tactic in the instant in question was to leave breadcrumbs.  To suggest and actually allow defeat.  To maybe look like I am mistaken.  But I felt I had to do all of this simply to save the poor person in question.  Because I really do think they are going to get hurt.  Rejected and ignored by their own people in the scenario they have personally created and that is clearly deeply important to them. 

I don't think they can let go and that as time goes on, the people around the aspie will simply ignore them and do what they want.  I think the scenario will simply evaporate gently.  I also think the closet aspie will not be able to adjust to and go with this evolution of what is a huge and long standing structure of organization.  Now something of an institution. 

I have already had first hand proof that a small number of people involved in this entity can be found to be using it to mitigate mental health issues.  Awarding themselves with power and authority, and the chance to do what they really want to do.  Whereas anywhere else in any other situation, they would not be able to do this.  Using the scenario to stand tall and believe that others acknowledge and relate to them as having strengths and abilities and authorities they are desperate for. 

I don't think that is a bad thing actually?  Why not if they don't hurt anyone and perform their roles okay?  Sadly such a person was very harmful to me.  (I bet you where just waiting for that one?)  Although they where also responsible for bringing me into this ‘world’, which this year I am yet again cheerfully entering.  I am certain that although the first time ended badly, the third this year will be like my second.  Great fun and an adventure.  Although surely I am getting too old for all this….

Or not.  I see my work in all of this is to positively represent my kind.  A hybrid of my Dharma/Buddhist aspirations and practice, and the skill set I developed as a teenager and in my early twenties as a would be actor (I cringe to write this but its true.  I performed in a huge amount of plays between the ages of 18 and 24, ultimately spending a year in the East 15 drama school and not completing the 3 year professional acting course.  Just as well one way or another).  Nowadays I go out in front of audiences and I relate what it is to have experienced, read and seen so much of my own kind whilst being one myself. 

I try to be a sort of Rosetta stone.  Someone who spent all his life up to the age of 41 not knowing who and what he was, then ended up married to someone in the same position.  My working and private life coupled with my past all focused on this one time of my life.  To go out there and tell the truth, whilst forever acknowledging I maybe wrong.  When I do a show, I invite the audience to join in?  Correct me if you will?  Come on, let us all create an aspie space and share?

At the end of the days training in Birmingham, two of the GP’s came out to me as being on the autistic spectrum, let alone having children who where.  I made a comparison with gay people that was commented on when I was writing online, outing the man I have mentioned.  Yes, I responded, I do indeed see the spectrum of sexuality as being a perfect parallel and metaphor for our kind.  Aspies are on a neurodiverse spectrum in relation to being non autistic – which is as relative as sexuality.  It is not an absolute.  Only when you have enough properties occurring at once can I notice you in that special way, and know you are one of our tribe. 

Sound familiar?  Well if it does, maybe best not say anything.  ;)

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