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

 

 

14 Comments (+add yours?)

  1. superherodad72
    Aug 30, 2013 @ 17:54:54

    Beautifully said. Amazing post…

    Reply

  2. srsalas
    Aug 30, 2013 @ 18:35:34

    I knew things had been difficult lately, and this post really lays so much of it out there. What a difficult share. My very best to you and I’m always around if you need a chat. xx

    Reply

  3. A Quiet Week
    Aug 30, 2013 @ 21:53:23

    I understand this so well. I’ve been having my own existential evaluations. My happiest times were working as a clerk, organizing files in my universality’s graduate school. I struggle, every day. I have a happy core, but sometimes, I just don’t have one drop more energy to give to the world.

    Online friendships are meaningful to me. I don’t need a thousand words or details or even conversations to like someone. I see your icon pop up and it’s hooray! We are much alike.

    I am rambling! I am trying to say, yes me too.

    Your friend,
    Lori Degtiarev

    Reply

  4. assalih1969d
    Aug 31, 2013 @ 12:49:43

    hi, when I joined twitter I was at the edge I was born with an urge to please my abusers & abuse my caretakers when I met aspergers I knew I found myself here ,there I have understanding,,,
    Dahlia A.Assalih

    Reply

  5. Ictus75
    Aug 31, 2013 @ 17:03:03

    Thanks for the great post. You’ve described my life, more or less. Like you, I don’t want pity. But some days I do mourn what could’ve been, if not for Aspergers. I like who I am, just not always how I am. The social walls weigh heavy at times.

    Reply

  6. Whacamole Mom
    Sep 01, 2013 @ 07:13:55

    Thank you for sharing this. Without doubt, I know that you have touched so many more people (IRL and online) than you can imagine.

    This brave post gives me more hope for my daughter than any others I’ve read before. I think that will make sense to you.

    I’m just sorry it has to be so hard for you…for her. But I think all of us feel like impostors sometimes… it’s survival. (If you have a moment, you can see it at the end of this post:
    http://www.whac-a-mole-life.com/2013/04/the-whatifs-grow-up.html )

    So, to sum it all up: you rock!

    Reply

  7. iamjjstone
    Sep 01, 2013 @ 19:53:44

    I just found your blog for the first time and…..wow. As someone with diagnosed ADHD and possibly an Aspie, your blog and the time you’ve taken with it means so much. I will spend hours reading it!

    Reply

  8. mindretrofit8
    Sep 02, 2013 @ 19:38:15

    There are so many things that you have written in here that ring in my spirit. Just today I told my husband I wish I had a workout partner, what I meant was just one person who I could call friend in real life. I have had very similar thoughts about my funeral too I am fairly certain that many of my family would not come.

    It is not about pity it is the reality. I think my “friend” thoughts were spawned from having a couple weeks of successful social interactions in the real world, however, I ended up becoming exhausted, fatigued, sickly, and fighting off anxiety and depression.

    I appreciate so much you writing and sharing this post. Your words mean a great deal and I thank you! 🙂

    Reply

  9. mindretrofit8
    Sep 02, 2013 @ 19:44:38

    My comment disappeared?? Let’s see if I can remember it…

    I relate to many things you share here. Just today I told my husband that I wished I had a workout partner, what I meant was I wish I had a “real” life friend. I have had similar thoughts about my funeral. I am fairly certain many of my family would not even come.

    I do not seek pity it is reality. I think my “friend” thoughts were spawned by my recent successful social interactions, however, I ended up exhausted, fatigued, sickly, fighting off depression, and anxiety by the end of the last week.

    I appreciate you sharing this and I thank you for your honesty! There were moments when I felt as if you had read my thoughts and feelings.

    Reply

  10. Steven Anderson (coyotetooth)
    Sep 03, 2013 @ 06:37:46

    Yes. I blend in so well, I become invisible. My friends, in real life, have fur and feathers, and shells. My constant companion is my mind. I wrestle with it daily. The older I get (and I’m bordering on great-grandparenting), the further from society I wish to be, except for family. I laugh.

    Work. Always strive, and achieve, to be the best of the best. Then, I move on. Without a second thought. I am soon to move on. Pity . . . Isn’t something that I would give to someone. Understanding, I give freely.

    There is reason I walk. I need that balance. My walks are getting longer.

    I live The Howl. I’ve seen great minds destroyed by their owners. As a friend, please, maintain a balance . . . You have a beautiful mind and soul.

    Reply

  11. Maynard
    Sep 03, 2013 @ 09:25:34

    Well said. Thank you for sharing. My son is often alone in a crowded room. Most days all day. At times it breaks my heart. At times I’m so proud of his tenacity. I wish “more” for him. But more of what? I struggle with that question!

    Reply

  12. Petrossa
    Sep 15, 2013 @ 12:09:58

    After 60 yrs of it looking back i can say it was a stormy ride, but if someone would offer me a pill that would instantly take away my Aspergers i’d refuse it. Yes there are downsides, the above is very recognizable. But after your 30’s things usually pick up because by that time you should’ve mastered all the tricks to fake your way through NT society.
    The major downside, the permanent existentialist (nihilist in my case) frame of mind is hardest to live with and can only be handled by just not thinking about the future. Carpe Diem and that stuff.
    I bury myself in DIY’ing my house endlessly inventing new gadgets,constructions. Drives my wife sometimes crazy, but she accepts it’s something i need to do to stave off despair.

    The upside, the lit up mind, the continuous stream of information, the speed of thought, the ease of grasping big concepts at once without needing much information are great reward which i really wouldn’t want to miss.

    Reply

  13. Lisa
    Sep 18, 2013 @ 22:30:57

    Thank you for this. As the mother of an Aspie son I feel this in my heart often.

    Reply

  14. ravenambition
    Oct 24, 2013 @ 16:28:44

    Yep you got that right. I was contemplating on the same subject just now. Read my archived blogs. I haven’t yet touched on the aloneness factor. It is a lifelong cement cloud.

    Reply

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