Mark’s Story

Description:

Mark ‘built masks*’ and ‘faked neuro-typical behaviour’ all his life whilst struggling under the surface with social interaction and unable to find a settled home or work life. Mark was diagnosed with autism aged 50 and self-identifies with a PDA profile. But lack of recognition of this more atypical form of autism leaves him feeling misunderstood with no services and support that can meet his needs. Mark writes poetry to convey his feelings of isolation.

*Mark’s story includes several mentions of masking. Masking is when a person suppresses their natural behaviours in order to conform to perceived social norms. It is a coping strategy that some individuals on the autism spectrum adopt, be it consciously or subconsciously.

I built my first mask at the age of sixteen. I adopted roleplay scenarios where my spontaneity would be construed as planned humour. I never excelled at sport but participated in every sport that I could and learnt the rules of the ones that I couldn’t. All this in order to get rid of excess adrenalin and fit in. I knew the rules of every sport and game but could never get the intricacies of being social right. I was never bullied because I always stood up for myself due to a complete lack of fear. I had to work hard at being diplomatic, which didn’t come naturally, and taught myself how to speak formally as this was one less way to be laughed at.

I was conscripted into the Army which was a two-year nightmare, with me not able to fit in and my questions, answers and autistic actions seen as insubordination. I tried to fit in socially in a regimental world but came across as being too pally. Peers and superiors could not understand how I could go from being friendly to going ballistic in a matter of seconds, for no apparent reason. Despite all this I made it to Lance Corporal and was awarded four medals. Leaving the army, I had to readjust to live without the routine and learn a complete new set of rules. My second mask.

The next six years were reasonable with my good friend and fiancée just about making life bearable. Despite my IQ being measured at 144 at the age of fourteen, my grades were always poor grades and this was put down to lack of concentration. I’ve been to university three times, but due to my ASD never completed the courses. I have moved too many times, living in over one-hundred-and-fifty abodes in eleven countries on three continents. I am recently separated from my fourth wife.

I have had too many jobs to mention, about forty in thirty years! My best jobs were where I befriended the owner and ran the business as if it was my own. When they see my abilities, knowledge, resourcefulness and enthusiasm, they leave me alone to get on with it. I consider myself one of the best managers in the world because I get results and got things done due to my problem-solving abilities, my complex attention to detail and my OCD tendencies.

I survived early adulthood by gaining a friend who would stand by me regardless of my quirkiness or however abrasive my attitude was, and a woman who shared everything else with me. Both these life companions were taken away at the same time in a horrible car accident, where six people died at the scene. I was one of two survivors. As I was in hospital, I couldn’t attend their funerals and have never got closure on their passing.

Then I had to learn a new set of rules. Another transition. Another mask.

It was easier to devise these masks when I was younger and was driven to be, or appear to be, the best at everything. The older you get, the more difficult it is to create a working mask. My current wife started asking questions about my behaviour. I couldn’t control my anxiety and my depression got so bad that I lost my job in London and, with no friends or family in London, we moved to be closer to her family in Scotland. The only job that I could get was part-time, working with autistic young vulnerable children. It was a great job but I couldn’t work with anyone for more than a couple of hours, as my anxiety couldn’t be kept in check. It was while working with these children that I realised that I am autistic. It started with me being able to understand their unspoken wants/fears and a fantastic ability to talk them down or prevent them from going into meltdown mode. The drawback is that their anxiety gets to me and my anxiety gets to them.

My two personalities integrated, got to know each other and worked well together, knowing their boundaries. I can only explain it as a pliable, see-through shield or membrane; the two personalities pushed into each other’s space but didn’t overstep. I operated like this for fifty years by learning and teaching myself coping strategies and a shedload of roleplay. I have the ability to appear neuro-typical for short periods of time, but the spinning thoughts, anxiety and ‘work’ that I must put in and endure to achieve this is phenomenal. It takes it out of me and leaves me drained, agitated, irritated, frustrated and almost always spills over into bursts of aggression and, in some cases, self-harm.

I set out on a journey to get help.

I was initially diagnosed with adjustment disorder. I believe this misdiagnosis was at least partly because I’m well-spoken and can make eye contact. I had to insist on an autism assessment, and was eventually diagnosed with Asperger’s Syndrome at the age of 50.
Being diagnosed was at first a relief, knowing that there was something different about me which explained my difficulties, but it also confused and angered me. I realised that I’d done such an excellent job at faking neuro-typical behaviour for fifty years that I’d even managed to kid myself. This scrambled my brain.

Thinking that I would now get the help that I needed, I just ended up being passed from pillar to post. A national autism agency said they couldn’t help me because my problems, as far as they were concerned, weren’t autism-related. An assisted employment agency said that I was nowhere near ready to be placed in any work situation. I was sent for mindfulness therapy to help with my anxiety, but just discovered this was a name for a coping strategy that I’d already put in place after the car accident. Social workers told me that I don’t fulfil the criteria for their help. My request to see a community psychiatric nurse was refused because I was able to communicate with her. Anti-depressants just turned me into a zombie and didn’t improve my mood at all. No matter what I tried or where or who I turned to, I just can’t get the help that I need.

During this process I realised that Asperger’s didn’t really explain things properly, and not really trusting my psychiatrist I did my own research which led me to PDA. PDA seemed like a more accurate fit for me. I have extreme and sudden mood swings, am extremely impulsive and can go from love to hate and hate to love in nanoseconds. I have obsessions, particularly with ladies who don’t appear fazed by my quirkiness. To be accepted and spoken to as if I am just another person makes me make plans to spend as much time as I can with that person. I have role played all my life and have no sense of status towards others, rejecting all forms of authority. I avoid ordinary life demands such as personal hygiene. I voiced all this to my psychiatrist but was told that PDA isn’t recognised as a distinct autism profile in Scotland.

My incomplete diagnosis leaves me stuck in the middle. To be trapped between Autism and Asperger’s conditions has in practice reduced the understanding of the professionals serving me and restricted my access to appropriate support. It also leads to misunderstandings, like when I was arrested for possession of a knife and my anxiety wasn’t considered to be grounds for me forgetting to take the knife, which I used to self-harm, out of my pocket.

I need to know exactly what is wrong with me for me to be able to better understand my issues and to address them. I cannot fix what I do not understand. I feel I can express this best in my poems:

Do you know what it feels like?

Do you know what it feels like,
When you don’t want to go to sleep
Because all you want is eternal sleep?
When you can’t go or get to sleep
Because you can’t get or stay asleep?

Do you know what it feels like,
To speak to doctors who don’t understand,
To blend in with people who don’t give a damn?
To take medicines that’s been prescribed,
That doesn’t help or work as described?

Do you know what it feels like,
To attend A&E wanting to end your life
And get arrested instead for carrying the knife?
To give the correct paper work to a civil servant,
To be treated like muck because they’re ignorant?

Do you know what it feels like,
When a sudden unexpected change,
Causes anxiety, an ugly mood change?
To go to an appointment, prepared
And a silly change makes you scared?

Do you know what it feels like,
To appear as normal in public,
Then for no reason change very quick?
To appear angry, rude, mad and
Different due to the smallest demand?

Do you know what it feels like,
To know you have the ability, capability
But can’t because of an invisible disability?
To be called unwell, ill or disabled,
While to others you appear enabled?

Do you know what it feels like,
When neurotypicals treat you like muck
And you can’t keep your mouth shut?
Trying to educate people to understand
And they act like you’re living in dreamland?

Do you know what it feels like,
When your family avoids you, don’t get in touch,
Having no friends because your ticks are too much?
When you can’t stay married, can’t make it work
Because they find out you’re too much hard work?

Do you know what it feels like,
To be diagnosed with Autistic Spectrum Disorder
When you know that on genius your intellect borders?
“What’s the bleeding point!?” I scream, expecting no answer.
Instead I ask; Do you know what it feels like? I wonder…

Mark Wolmarans-Paterson

Knowledge v. Insight

The human body is equipped
With a defence mechanism,
Adrenalin, as yet unequalled.
It surges into the bloodstream,
Galvanising the nervous system.
Blood pressure is increased
And the pulse rate almost doubled,
Delivering oxygen and blood sugar
To the major muscle groups,
Thus speeding up reaction time.

Ironically, though
Although I know,
What it is doing to me,
I cannot find it in me,
How to bleeding handle it!

Mark Wolmarans-Paterson

The Unrepairable Mask

I have for too long worn a mask
And now I have a massive task
To separate this broken mask
From the man who is Mark.

Life’s journey led me on a road
That held many doors…
Each door that was opened,
Led me on an alternative path.

Through the error of my ways
And life just being life,
Doors were opened,
That should’ve remained shut.

A mask that was built
Through failure and guilt
To live another day
And this, to me,
The only way
For a broken me.

This mask, now, is broken.
Cannot be worn, anymore.
I am alone, naked, and adrift,
Far, far away from shore.

Mark Wolmarans-Paterson.

Looking for the Choice

The Choice has changed direction,
It has changed from white to black,
Following an unintentional lay way,
Knowing only the past, guessing not.

As a matter of course, all disappears.
Only the shadow remains, unmoving,
Symbolising the All, Now and Was,
Alienated from the Dream.

There are no final stages, no end.
The Interpreter returns, naked,
No shadow, seeing only the future,
Liberated from the agony of his ego.

The Dream, a reflection of all existence.
Black changes to white, the Choice returns.
Unionising knowledge and imagination,
Living in creativity and commitment.

The Mind becomes quiet, peaceful.
Like a pond, it mirrors basic divinity.
No more shadows, only black and white.
With this in mind, I found my true purpose.

Mark Wolmarans-Paterson

 

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