Posts Tagged ‘autistic’


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.


This is an article I have written about my experiences with Mental Health Services and Learning Disabilities in England. The article is going to be used to help healthcare professionals in their training for people on the autistic spectrum. All comments are welcome.

The Autistic Impressionist

Andrew Smith

Sunday, 20 September 2015

I was at a meeting recently with some healthcare professionals from various backgrounds, but all with an interest in autism. The meeting is held every three months at Halifax, West Yorkshire. It is always interesting to hear the views and opinions of the professionals that attend with regards to developments in local and central government policy that affect both the professionals and people on the autistic spectrum.

One of the topics that came up was the diagnosis of autism and Asperger’s Syndrome and which local services a person with high functioning autism or Asperger’s Syndrome comes under. For myself and many others this was a choice between Learning Disabilities (LD) or Mental Health (MH). This is a topic that is often discussed because it affects nearly everybody who is involved with is on the autistic spectrum.

I recounted the story of when I was visited in my home by LD and MH services as they tried to determine which service I fell under and who would pay for any services I may require. This was of course far more important than anything else that may or may not decide I needed. What seemed to surprise some of the professionals at the meeting was the extraordinary lengths I went to, to ensure my house and myself were clean and well presented. What they didn’t and couldn’t know was how this also took over my life in the lead up to the meeting.

The advice I had been given by some support workers at a local autism charity was to present myself and my home environment in as natural and normal a way as possible for the meeting. This was to ensure that the professionals visiting me got an honest impression of how I lived and coped. This is to ensure that I or anybody else in the same position gets the right amount of support based on their circumstances and not based on false impressions.

However having Asperger’s Syndrome and quite possibly a touch of OCD as well this was something I just could not do. I had to tidy my house and prepare it as if it was a royal visit! And this was my problem. Despite knowing that this would go against all the advice I had been given and create the wrong impression, I still could not bring myself to leave my house as it was. The feeling to tidy up was intensely overwhelming and all consuming.

In the weeks and days leading up to the meeting getting and keeping my house tidy was all that occupied my every waking moment. There was nothing else on my mind, nor anything else I wanted to do. I had always been brought up to believe that you could live in whatever squalor you chose to do, but if you had people coming to visit you your house had to be a palace. And being on the autistic spectrum I took this literally and to extremes.

This was what, on reflection made my behaviour different to that of a neurotypical person. A neurotypical person would know when to stop and would not let the situation take over their lives in the way I did or at the very least have far more control over the situation than I did. In addition they would I believe take the advice of the charity and leave their home as it was.

But I am not neurotypical and I didn’t know when to stop cleaning. In the weeks leading up to the meeting I kept thinking that although things were clean they would get dirty again. But then I thought that unless I cleaned them they would be dirty on the day of the visit wouldn’t they? This cycle of thinking, cleaning and reflecting dominated my life over this period of time.

All these thoughts were going round and round my mind 24/7 in the days and weeks leading up to the meeting and they took over my life and overwhelmed my daily existence. However looking back I believe I needn’t have worried as much as I did. Nobody seemed that bothered by how clean or unclean my house was.

All they were bothered about was me and I hadn’t prepared myself for that either mentally or appearance wise. Again I got the impression that this didn’t really matter too much at the end of the day to anybody there. In the end Mental Health was selected as the service that would have responsibility for me and I had more in-depth meetings with people afterwards.

What I hope this story illustrates is how the desire to put on a false impression for people can takeover and overwhelm a person’s life to such an extent that is their life and the sole reason for existence. They may give the impression of being tidy, clean and in control but in reality they are untidy, dirty and have no control.

But the desire to create the right impression is all that matters to them and they will go to any lengths and endure all forms of mental and physical torture to do so.

What this also illustrates is the constant fear many people on the spectrum live in of being judged by others. This has an effect on an individual’s personality and impacts on their identity as a human being living in a social world they have tremendous difficulty understanding. As a result some people and especially people on the spectrum will do even more to be accepted and judged in a positive way even if this is detrimental to their actual situation and health.

I will add that this is my own personal experience and others on the spectrum may react to the same situation very differently and exhibit very different behavioural traits.

© Andrew Smith 2015