Archive for the ‘Asperger’s’ Category


Alexithymia. A new word for me. A new word to get my tongue round and to understand in different ways. Alexithymia is the name for a condition that means people affected by it are dysfunctional regarding emotional awareness, social attachment and interpersonal relating. It is a condition that co-occurs with autism but does not share the same symptoms. Researchers are constantly debating which symptoms are related to autism and which are related to alexithymia. More can be read about autism and alexithymia and how they co-exist with each other by following the link: https://sites.google.com/site/geoffbirdlab/home.

In layman’s terms you have no words for anything, no emotions, nothing to say and nothing to talk about. It can be as if you are a shell just existing and literally going through the motions until you die. You have no life and spend most of your time alone wondering why you are the way you are and why people shun you. It drains you constantly wondering why people avoid you, don’t talk to you, cross the road to avoid you. You have no energy left to deal with day to day life. All you do is exist for reasons unknown to you and to anyone around you. You have no purpose in life, no reason to exist. All you can do is wonder why…

Dr Rachel Moseley from the University of Bournemouth describes alexithymia as: difficulty identifying what you’re feeling, difficulty describing what you’re feeling, and an externally-orientated, ‘stimulus-driven’ thinking style (which means that people with alexithymia don’t tend to be introspective about their feelings and emotions or spend a lot of time thinking about how others might be feeling – because emotions are very confusing to them. They therefore tend to think more ‘concretely’ about things that are going on (i.e. EXTERNAL stimuli in the outside world rather than INTERNAL feelings). And adds that this is the most common view but not the only view. This is a view I can relate to from my own personal experiences.

In my personal experiences I have been shunned by people at work and in social situations. In relationships I just sit there at the most wondering what to say or do, usually just staring blankly at a wall ignoring the person I’m with. It’s no wonder I’m single. How am I supposed to respond to questions of how I feel when I cannot interpret any feelings I have? And what happens when you don’t feel anything? How do you answer someone who asks you how you’re feeling when you’re feeling nothing at all?

Conversation does not come easy to me. I struggle to keep up with what is being talked about and quickly lose interest preferring to do anything but converse. If someone has a baby it’s so what, people buy a new car and I’m wondering why they are so excited, they got a new job or a promotion and I’m wondering if they will be so excited in a year’s time. I’m not interested right now.
Even if people are ill, injured or dying there’s barely a flicker of an emotion. Life goes on and these things happen. At funerals there’s no tears. I go because I know it’s expected, a social norm and because I know it means something to my friends. This could be seen as pragmatism and stoicism at an extreme most people cannot comprehend.

And yes I’ve felt lonely, isolated, anxious, stressed, depressed and suicidal all because I did not understand why some people wouldn’t talk to me, why some people shunned me, why I found social situations difficult, why I didn’t behave and express myself the same way other people did naturally, why no-one wanted a relationship with me, why I felt different and not in step with the rest of society. This is when you’re at your lowest, everything is too much to cope with and ending it all seems the only way out.

Yet I’m still here. The suicide attempts failed and after years of trying to find a purpose in life I did, study and research. I started an access course at college and now I have just started a PhD the highest qualification you can get. I have found something I enjoy doing and something I feel that I am good at and is worthwhile.

I was diagnosed with Asperger’s Syndrome at the age of 41 in October 2008. This answered many questions, filled in gaps and helped me to move on and understand myself and others better. There still seemed to be something missing but I assumed it was my Asperger’s being unique to me and got on with life still wondering about some things and still making some mistakes the same.
Then in March this year I was diagnosed with dyspraxia and this helped move things on a little bit. A lot of it crosses over with Asperger’s but there was still something missing, one more gap to fill. Then the lead researcher on a study I had taken part in Dr Rachel Mosely emailed me the results of some research I had taken part in about autistics and self-harm and here was a new word alexithymia.

I read about it and I recognised myself in the description. All of a sudden it made sense why I was the way I perceive myself to be. Why I find social situations difficult, why I feel emotionally detached and why I find it difficult relating interpersonally. The final gap in my personal identity had been filled and I had a name, a label to attach to my feelings and identity. I could call them something, read about them and understand them. It’s how my mind works.

I felt that all the anxiety, stress and pressure had been lifted from my shoulders. No longer did I need to try to fit in and try and be someone else because I could not and cannot be that person. I can only be me. I don’t need to try anymore I can relax and let the things I cannot control go and concentrate on the things I can do.

I understand now why I struggle in relationships and social situations and why I don’t feel emotions the same way others do and I’m fine with that. I get why my supervisor at university says they want to see some enthusiasm from me and then stare at me wondering why I’m just sat there staring back at them blankly. I now understand so much more about myself, people and life and all because of one word.

On a daily basis this means I struggle to understand why some people seem to get on with others and make progress effortlessly , talking to others, making friends, making contacts whereas I struggle to do these natural, normal interactions and are quite often left at the edges of discussions and meetings looking on, wondering what I need to do to get my voice heard and feel involved in society. This includes my autistic friends too. Many of them have social skills that I am envious of and I can only stand and wonder at their ability to start and hold a conversation with others.

One skill I do have is that I can write. I can write about how I feel and what I see going on in society far more effectively than I can talk about it. I don’t know why this is, it’s just the way I am and I’ve long got past the point where I would lay awake all night worrying about it. I can read theories, apply them to autism and write about them. Once I’ve written about them I can talk about them all day long, until the topic changes and then I’m lost.

I am lucky too in that I have a good and varied circle of friends and I look at them differently now. I see them in a new light and realise how lucky I am to have them in my life. I am also very lucky in that I am studying for a PhD and if I’m having an off day I can stay at home and do nothing or go for a run over the moors and get back to being myself.

I understand and appreciate that not everyone would feel the same way I do. I know people who don’t like labels and are always trying to fit into society in as unobtrusive a way as possible and all they want to do is to feel accepted and that they belong. And I have been there too fighting a constant battle to be accepted and understood but it was a battle that drained me of everything and nearly destroyed me.

Now I’m just myself and if people like me they do, if they don’t they don’t. I understand myself now and understand why some people like me and some don’t. I feel so much better now and I’m sure people are noticing because more people are saying hello to me and smiling at me. It’s amazing how one word can change everything in your world.


he watches the children
silently, patiently, intently
observes their behaviours and interactions
pays attention to their communication and play

making notes about his experiences
these kids differ from others
in subtle but important ways
thoughts churn in his mind
he knows he is onto something new

in a world of their own
alone and aloof
detached from the world
still a part of society


they never see you when you’re alone
with the tv and four walls for company
the walls that talk back to you if you listen long enough
the tv that’s stuck in an endless time warp of bygone shows
repeated, repeated, repeated
these are your friends for today
the only ones who will see you
they’re here for you when you’re alone
watching the sky turn from white to grey to black
bottled up feelings of hopelessness and worthlessness
bounce off the walls going deeper inside you every time
words form slowly one at a time as they
take off into the universe in search of someone
to share ideas and thoughts with
tears form as slow as ice cracks
drying on your skin before they can flow down your cheek
you don’t even notice them
as the day drags on longing to be over
you turn to the bottle your one true friend
and share some hours together
blocking out the numbing reality of life
till you wake up in a daze tomorrow


It’s the anxiety that kills you
Strangles you alive
Forcing even the bacteria
From the bowels of your stomach
So you have nothing left
Not even a bacteria
To settle the nerves
Raising from the
Depths of your stomach
So you feel nothing
See nothing, hear nothing
Life becomes a blur
As you shake powered
By nervous energy
The foundations of your
House begin to move
Cracks appear in the
Road outside as
Your shaking threatens
Global peace, Trump and Kim
Blame each other for
Launching a nuclear missile
And just when you
Cannot take any more
It stops
Your mind and body
Cannot take anymore
Exhausted by anxiety
They give up the fight
You feel relaxed
So you see what you’ve missed
Texts, calls, emails, bills
Appointments, deadlines
Everybody wants you
Everybody wants something from you


The dreaded anxiety once again came out of the shadows and attacked me again this weekend. I could feel it coming but I chose to ignore it and then fight it believing I was bigger and stronger that it was and I could beat it. But in the end it beat me again and I had to succumb to its relentless onslaught, admit defeat and move on.

But it hurts why it happened and it’s beaten me again and I couldn’t do more to beat it.

On reflection, the signs were all there. Posting endless messages to friends, pushing myself hard at the gym, overthinking everything and a head full of thoughts swimming around going nowhere.

But I did nothing about them until it was too late risking friendships and my health in the process.

Today with the anxiety gone I have had time to think about this particular anxiety attack and why it happened. And instead of asking friends to accept me and understand me I’ve decided to write down my thoughts about it in the hope I can begin the fight back against anxiety and beat it once and for all.

As I have written about elsewhere on my blog I competed in a tough fell race, the Trigger Race on January 15th and despite having to retire after 15 miles I am still very proud of what I accomplished that day.

I had 3 potentially life threatening experiences in 4 ½ hours on the Trigger Race and they were the type of situations which put you off doing something like the Trigger Race ever again or make you want more.

I want more.

And that is part of the problem. How do you recreate situations where you’ve pushed yourself way beyond what you thought you were capable of, cheat death 3 times and learn that you are tougher and stronger, mentally and physically than you ever thought you was?

But it’s the buzz that gets you. The buzz of having been on the biggest adventure of your life and come through a far better person? The answer is you can’t even though you might try. The buzz lasted over a week for me, an amazing feeling I wish I had every day. However hard you try though you can’t recreate that situation with those feelings. They are unique to that day and that situation and will be forever. Time to move on, remember that day but create new situations that give me a different buzz.

On top of everything else I tore my right calf that day which has resulted in around 4 – 6 weeks with no running. It’s not a major injury nor is it a long time off, but when running gives you your buzz, makes you feel good and helps you control your stress and anxiety it’s a lifetime. I can still keep fit but lifting weights or going on the spin bike at the gym just doesn’t seem to give me the same buzz as running over open moorland, powering up hills and flying down the other side.   

So, my only option is to accept my situation and be grateful that it’s not as bad as some of my friends are going through and I can still go down the gym and keep fit.

And there’s the waiting for my masters course to start and other things to happen. All of a sudden I’ve caught up with pretty much everything and there’s only so much reading you can do in a day before your head starts to turn to mush and workouts at the gym become easier because you have more time to recover and time doesn’t matter. Friends have promised to meet up but they have their own busy lives to contend with so you have to wait until they are free. Boredom sets in as you begin to look for things to fill your day with and you try not to become an annoyance to friends and not bombard them with endless messages that they don’t have time to read. And you start thinking about anything and everything which quickly leads to overthinking which is not a good situation.

Try and relax and enjoy the downtime because it won’t last forever and quite soon you’ll be wondering how you can fit everything you want to do into the day, and respect your friends and the lives they lead because they are different to yours.

So all in all a series of events starting with the Trigger Race has snowballed and cumulated into sky high levels of anxiety and stress which have boiled over when they became insurmountable and lead to a mini breakdown.

There are lessons to be learnt in order to minimise the impact anxiety has on me the next time and maximise enjoying life and writing this blog is a big part of it.


One of the biggest problems I face in my daily life living with Asperger’s is not only understanding the facial expressions and non-verbal communications of others but understanding how my own facial and non-verbal expressions ae interpreted and understood by others. I spend a lot of time wondering and worrying if I come across to others the way I intend or if I’m misunderstood, misinterpreted and come across in a completely different way. This last one could be a possibility as I have been surprised and confused by the reactions of others when I have looked at them and they have responded completely differently to how I expected.


I believe you
When I stare in your face
And see a happy smile
Beaming back at me

I believe you
When you tell me you’re
Happy to see me
And kiss me gently

I believe you
When you hug me tightly
Squeezing me warmly
Feeling your skin on mine

I believe you
I believe every word you say to me
Every touch of your person
I take it literally

I believe you
Because I know no other way
And whether you truly mean it or not
I still believe you

 


My eyes do not see you, as you see me
I do not see the emotion and fire behind your gaze
nor the hopes and heartache that your eyes must conceal.
The fears for the future, the anguish of the past, are all lost to me.
I only see your eyes as they are,
two deep blue pools set
in a face full of familiar features,
a nose sloping down mountain like
ears leading to deep tunnels,
teeth like prehistoric monuments,
They are all the same to me.
And when I try to read the stories
that live behind those eyes,
the life they must hold,
how I wish I could read them
like I read the words in my books.
But I cannot know them.
For to know them I must be able to read them,
and that I cannot do.
So all I can do is to sit here and imagine,
imagine what sights those eyes have seen,
the places they have been,
the memories they hold.
But as I do that I wonder,
I wonder if you can read my eyes
and tell me the stories they hold?
Can you read me in ways I cannot read you?
Can you open the pages that my eyes hold behind them?
Can you see the fields, the mountains, the lakes,
the skies that I have seen just by looking at my eyes?
If you can then you are indeed a lucky man
and you are truly gifted.
At least in my eyes.


Last Saturday 28th May I got an email for my sprint coach asking if I would like to represent Bradford and District in the Regional Finals of the Special Olympics on June 26th at Sheffield. I qualify for the Special Olympics because I have a diagnosis of Asperger’s Syndrome and have elected to run the 100m, 200m and possibly 400m.

To say I was surprised is an understatement as I have not done any track sessions in the past six weeks and as anyone who has run on the track will know it is very different to running on the road especially if you are running the short sprints as they are all about explosive power in short bursts with no second chances to redeem yourself if you have a bad start.

My shock soon turned into a feeling of pride at being asked and then apprehension at how I would approach the event mentally. I’m quite happy with my physical form at the moment and enter races knowing I won’t place but still with the intention of doing my best and enjoying myself.

With the sprint competition I have a chance of doing well as I will be competing against runners of a similar ability so much of my chances of doing well will rest on how I approach the event mentally.

Where to start though when you are looking for inspiration? Do you look on the net at the thousands of articles written by coaches and champions or do you look for something closer to home written by someone you have met and can relate to?

One person I have met through running is Ben Mounsey. Ben is a rising star on the fell and mountain running scene but someone who is down to earth with it and always willing to share his knowledge and experience of running and competing with everyone. Ben has written several blogs about his running experiences detailing his successes and failures and most importantly his approach to competing.

These blogs are extremely helpful as they give you an insight into the mind of an elite level runner who is a dedicated and determined winner and every runner of any ability can learn much from them if they have a desire to improve their personal performance and push themselves a little bit further.

One article had stuck in my mind that Ben had wrote called, ‘How to Become a Mountain Lion in 10 Easy Steps’. Here Ben details the changes he has made to his life in going from a top club runner to an international star. This includes tips on training, nutrition and equipment but importantly for me mental attitude.

This article is very useful as although it is written from the perspective of a fell runner it can be adopted to any form of running including sprinting.

Equipment is important and sprinters wear special spikes as many of you will know. I’ve never worn spikes so at this stage it is probably too late to change for this competition but in the future spikes will be on my list.

Nutrition is important in all forms of sport and for the next 3 weeks I will be following a high protein diet with plenty of fruit and veg. This is to ensure I have the muscle I need to maximise my explosive power off the line and be able to sustain that power all the way to the finish line. 200m is a long way when you’re going at full speed from the start!

And whilst I have lost a considerable amount of weight through running for this competition I need to strip away as much body fat as I can so all alcohol and fast food is out until after the event. If anyone needs a lift just ask! The leaner I am the faster and more efficient I will be.

How you train is important and as with Ben I will be running up hills to build muscle, power and endurance. I may not do as Ben does and storm up Trooper Lane but living in Queensbury I have plenty of hills to choose from to run up again and again and again.

I will also be on the track practising sprinting but also visualising what I am going to do on my run, where I will put the power down and where I expect to be going at full speed and pushing myself beyond my limits. Visualisation is another technique Ben recommends in order to maximise your run especially when you are competing.

I’m hoping that all this will enable me to perform at my very best on the day and whether I finish first or last I will know that I have done my best in my preparations and performed to the best of my ability and achieved more than I could ever dream about two years ago.

Whilst I will never reach the elite level Ben is at I can apply the techniques Ben has adopted in order to maximise my potential and be the best sprinter and runner I can be. And it is easier to be inspired by someone you have met and can relate to rather than someone who you only see on the TV every now and again.

Here is a link to Ben’s article if you want to read it: https://www.google.co.uk/#q=10+easy+steps+to+becoming+a+mountain+lion

 


watching people crossing
the bridge of life
going back and forth
so easily, so freely
and i stand here looking
for the path that will
lead me to that bridge
and onto the path i desire