A lifetime alone………..with #Aspergers

 

Alone with Aspergers

 

This post is long overdue and is the sequel to Aspergers Unmasked

I know that large numbers of people follow my blog and that my postcards, from the edge of the Spectrum, are appreciated by many, particularly parents of autistic children.

But I need you to see the other side of my blog. The other side of all those edited, re-edited and polished posts.

This is me, the man behind the blog, behind the posts and behind the tweets, the man behind the mask.

 

Alone

Outside of social media I have no friends and with fleeting exceptions, this has been the story of my life.

You don’t have to look very far to see it, hidden in plain view, my twitter and blog profile picture.

This isn’t about pity or self-pity, this is about honesty.

I remember attempting to convey this fact to my mother a few years back.

I told her that I couldn’t think of one person, outside of my family, who would mourn my passing and that my wife would have no one to invite to my funeral, other than her friends and family.

She explained that for most people (outside of celebrities, of any stripe) funerals are not generally invitation events.

I never knew that.

Of course what’s missing in this picture is any kind of response from her that is remotely compassionate.

More of that later.

 

Crisis, what crisis?

I have been going through a tough time recently. I won’t bore you with the details but the stress and anguish has at times left me more or less in a zombie state.

I’m sharing this because I want you to know that Autistic people who can ‘wax lyrically’ and on occasion inspire others, are not immune from the effects of Autism – far from it.

Recently I’ve had a significantly heightened awareness of my autistic impairments.

That doesn’t necessarily mean that I am becoming more impaired, I could simply be noticing them more.

Autism and stress don’t mix very well.

Add to that mixture ADHD and very probably PDA (Pathological Demand Avoidance Syndrome) and you have a catastrophic cocktail of impairments that together fuel regular experiences of the flight or fight mode, extreme anxiety as well as panic attacks.

I was discussing this with my Doctor last year and he bluntly but sympathetically warned me that this was ‘likely to get worse with age’

He was not wrong.

 

An industrial Age kid

Anyone born before 1975 is likely to have graduated High School in the Industrial Age, before the Information Age had really taken hold.

A time when manufacturing was at least as important as ‘service’ industries.

An era where the work place was far more suited to those with an Aspergers profile and where an Aspie could go undetected for their entire (working) life.

It has become increasingly clear that both my parents were somewhere on the Spectrum.

I strongly suspect that there was more going on than just autism, at least for one of them – but I digress.

Both of them were employed in mechanical/repetitious jobs, one in manufacturing/traditional labor, the other in a service industry.

Life was simple – news traveled slowly and people even slower.

I suspect this is one of the (many) reasons for the ‘increase’ in autism today.

The service based economies of the so called developed world, are less forgiving towards people like me, who are on the Spectrum.

Job applicants are told that they need to be able to work and thrive under pressure!

There are deadlines and the corporate sword of Damocles hanging over our head, lest we should underperform/underproduce.

Who the **** takes a job that guarantees anxiety?

Even lawyers and accountants engaged in significant amounts of mechanical work in the industrial age.

Now there is the career ladder, the internal politics and of course the increasingly political styled interaction with ‘key account’ clients.

A far cry from the legal clerk collecting Judicial precedents for the trial Lawyer, or the accountant, mechanically checking figures and then mechanically preparing accounts…………..by hand!

With some fairly limited and caricatured exceptions, the workplace of the Information Age can be an uncertain and frightening place for Autistics, compared to the Industrial Age.

 

Surviving the Information Age

My career, if you can even call it that, could be described as a series of somersaults, although there were extended periods when it was more akin to a drunk staggering from bar to bar on a Friday night.

My real resume, the one that no prospective employer would ever see, would be a study in itself, a case study of a misfit.

I have managed to survive this hostile environment by sheer intellectual brute force.

But there are times, that are becoming more and more frequent when I am barely hanging on by a finger nail.

That’s the big takeaway.

I have been consistently measured, over several decades, as being intellectually gifted – and still I can often just barely cope.

I don’t know how I would have coped without it.

Most people do not have this advantage/trump card/silver spoon.

They are likely to endure far more hardship – don’t believe me? 

Check the employment stats, barely 15% of us are in full time employment.

Even assuming that all the autistic people in full time employment are Aspies, that’s just over 1/3rd of us at most.

Around 70% of autistic peoople are either institutionalized or in the full time care of someone, family or otherwise.

Statistically that means at least 15% of these people have ‘higher functioning’ forms of Autism.

 

Autism Positivity

Each year in April, the World Autism community celebrates their uniqueness and the US observes a month long Autism Mardi Gras – and I get it.

It’s tough being autistic, or the parent or carer of an autistic person.

There’s a lot of misunderstanding outside the community as well as what at times seems like a bombardment of insensitivity and prejudice.

For one day, or one month, we put on our bravest, happiest, suck it up faces – and I get that too.

But the fact is that my autism impairments suck, they are a relentless, lifelong burden and I will freely admit that this has taken a devastating toll on me, the quality of my life and my family.

I wonder if I would still be breathing if I had not managed to get married and even more remarkably stay married.

Perhaps I would have drunk myself to death?

I have little doubt that the mental health challenges that I have faced over the last few years would have afflicted me much sooner had there not been someone at home providing, structure, support and companionship, albeit strained at times.

 

Don’t cry for me

Although this may read as a rambling life story of sorrow, this post has not been written with pity in mind.

I believe there is a culture of denial in at least some of the Autism community, or at the very least an authenticity crisis.

Someone needs to point out the elephant in the room, that Autism impairments suck, even for the gifted.

I also owe it to my followers/supporters/readers to be honest about the reality of my autism.

Outside of my family, I am serving a life sentence of solitary confinement, including work colleagues – and EVEN those who I consider intellectual peers.

So my message is that it’s OK to pretend, it keeps hope alive and perhaps even keeps us alive, period, but allow yourself time to face the reality of autism in your life and perhaps even grieve from time to time.

We all need to occasionally put on a brave face, but we also need to be honest with ourselves.

 

I will be your friend

 

 

Wordless Wednesday – Only Beauty: Divine Intervention via @SuleimanElia

Video

Dinner with friends

 

I have written previously about the complexities, discomfort and anxiety of social dining.

I described this in ‘working lunches‘ and also eating out in general in Aspergers and Eating out, a Surreal experience

 

Although the stage design is different, I experience the same feelings when attending small social gatherings at people’s homes, with the exception of close family.

This short clip from the 1974 movie ‘The Phantom of Liberty’ succinctly captures the essence of the absurdity that I usually perceive on these occasions.

I have no idea whether the filmmaker, Luis Buneul, was ‘on the spectrum’ but this is a perfect example of how I experience these events – wishing I could just eat my  food without being constantly distracted, or worse still interrupted, for the purpose of contributing to the mind numbing trivia bouncing around the table.

Buneual won the Foreign language film Oscar 2 years earlier, with another Surreal movie, ‘The Discrete Charm of the Bourgeoisie’

 

The Dining Scene (The Phantom of Liberty)

 

Video

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