Aspienaut - WIRED differently

I was asked by a parent on my blog, “Why is it so hard for people with Asperger’s Syndrome to make decisions?”  In order to attempt to answer this or at least shed some light on the topic I will explain my own experiences and struggles with decision making.  I would hope in doing this it may help explain some of the main issues involved.

By writing this I am not, by any means inferring that all people on the spectrum have difficulties making decisions.  I am writing this because it’s an issue for me personally. 

When I analyse my own difficulties in this area several things are clear.  Much of the value for people not on the spectrum in asking others opinions in order to make decisions is absent in me.  An extension of the trait of not expressing emotional reciprocity, or not showing an emotional response in return; not needing to share or point things out.  This combined with issues around, theory of mind or cognitive empathy; predicting the thoughts and responses of others through non-verbal cues and facial expressions means that I tend not to take into account the thoughts of others; believing as I tend to that everyone thinks as I do.  I regularly need reminding that this is not the case and other people have minds of their own (who knew!).

Then there’s my, ‘all or nothing’ or ‘black and white’ thinking.  This really effects my decision making as I tend to miss the grey areas in a topic and see everything in absolutes.  This I know has had an impact on relationships and decisions made within those relationship when grey areas abound.  Combined with the other issues discussed it begins to be come much clearer why I struggle.  There is one final issue that impacts on decision making and that is Alexithymia.

None of these issues exist in isolation and all effect each other, as do character and temperament.  For me though Alexithymia is the issue that is most challenging.  This issue was highlighted to me when I had my second diagnostic assessment.  It was more of a shock in many ways that the confirmation of my Aspergers.  Put simply, Alexithymia refers to difficulties in understanding, accessing and processing ones own emotions and feelings.  Sometimes I really am not sure how I feel about something.  I struggle to access and express exactly what I think and feel about a subject or experience.  I had learnt to become quite passive and let others make decisions only to discover later that I did actually have strong feelings about the subject but couldn’t access or process them quick enough to offer comment when my input was required.  This happens regularly and has impacted my life significantly.

The way we experience the world is obviously also determined in part but how we process the information that our senses receive.  With the sensory and processing issues which are well documented in Autism Spectrum Conditions; I would argue that these combine with all the above to explain why making decisions may at times be difficult for those of us on the spectrum.

The key requirements for me in making decisions are time and an absence of sensory stimulus.  Otherwise, if its important, you best take a seat and be prepared to wait a while.

© Paul C Siebenthal March 2013

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I needed it, more than I’d known. The blue sky and the low winter sun.  A beach dotted with groups of people walking into a coming year.  It was all movement.

People walking slowly along the beach as the sea rolled back and forth, back and forth.  Loud yet soft.  The noise, above all, is rounded, circular.  Over and over, a perpetual falling. Then, there is that sound, the sound, the one I love.

A rotation and spinning, all on the out sweep.  As the sea rolls out, pebbles are spun back towards the breaking waves with a sound like natures static.  A beautiful chaos. 

© Paul C Siebenthal Jan 2013

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I was asked by a fellow aspie how I stay well when times get tough and I’m struggling, as many of us do, both on and off the spectrum.  It has been a really difficult time over the holidays and so I naturally started thinking about this question and decided to write this post.

Why do we suffer so?

I am going to explain why I struggle at times and I suspect that many can relate.  Being an aspie makes for a particular type of mind.  This type of mind, as I have spoken about many times, gives us some great insights and talents but it also comes at a cost.  I’m sure it will be no surprise to aspie’s and those who live with us that we struggle with human interaction.  We are more comfortable with objects than people and for very good reason.  People confuse us!  We struggle to understand their facial expressions, even the meanings of their words.  

We can also be very easily misunderstood.  I lack facial expressions and I’m often, even at the best of times, regarded as sullen and unhappy.  The tone of my voice doesn’t vary much.  I rarely share, other than my special interest at the time or many of my thoughts with others, or remember to ask their thoughts or interests.  I have very black and white thinking and so if I see someone regularly, they are in my life and I remember they exist.  As soon as they are no longer there I forget about them.  I forget to keep in touch.  I also struggle to remember that other people have different thoughts to mine, have minds of their own.  Add in sensory issues, obsessiveness, difficulties coping with change and much more besides and you soon end up with a mind that is prone to serious introspection, isolation and loneliness, which can then lead understandably to depression and anxiety.  That’s on top of having to manage an Autism Spectrum Condition.

I talk a lot on twitter about not suffering from asperger’s but from the ignorance of others.  You may question this given what I have just written but I still believe that it is often the reaction to and misunderstanding of the above that causes so much suffering.  All anyone wants is to feel that it is ok, truly ok to be who they are and be accepted.  People on the spectrum rarely feel like this because the very thing that allows this, is often your relationship and the understanding you receive from the people around you.

Now I have brought us all down, lets look at how we can stay well and get through those difficult times.  What I am going to describe is very personal to me and describes my own struggles and journey but I would hope others may find it helpful.

I have found medication helpful in managing severe recurrent depression and anxiety and have been on medication for 4 years.  I have also found Cognitive Behaviour Therapy and therapy in general helpful in times of crisis.  I found getting a formal diagnosis from a clinician I trust and respect very useful in order to understand myself better and to identify the areas I particularly struggle with.

I have only a few close friends but those friendships, although very challenging at times, are extremely important.  As are my social media friends and connections.

Ironically, it is my Aspieness that keeps me going.  My ability to focus on my interests and my need to learn and understand.  Even when I’m really struggling and I can’t think straight enough to write or read it is the desire to do so and the pleasure I know I’ll get from it that really helps.

Personal relationships are also valuable but after a marriage of 14yrs that failed and a recent relationship that has also ended I still find, despite the burning need for comfort and support, close personal relationships extremely hard to cope with and so for me at the moment it would seem I cope better living on my own.

For me, coping is about finding your Aspie strengths and developing them.  Coping with the cost of that, the best you can and asking for help when you need it.  I can’t over emphasize how important it is to ask for help.  People both on and off the spectrum shouldn’t accept being depressed and anxious as just part of their lives.  Yes, we are prone to such things but we often just need a little help to cope better.  Don’t be afraid to ask for professional help when you need it.  You are not alone. 

©Paul C Siebenthal Dec 2012.

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