But you seem to cope with life OK…

Since I posted on my blog about my Asperger Syndrome diagnosis, I’ve been quite overwhelmed by the support from friends, which is hugely appreciated and, I have to admit, something of a relief as you never know how people will respond to something like that.

However, I’ve also been asked various things by people.  Most of them are just curious and want to understand a bit more about it, but others have been more specific, wondering how the condition manifests itself day-to-day, especially when I “seem so normal” and appear to cope with life OK.  Those questions are hard to answer, as it is a condition that makes itself known to different degrees at different times and as I am at the high-functioning end of the spectrum it is often less extreme than what others might experience.  People’s expectations and preconceptions are largely shaped by media and fictional portrayals, which obviously focus on more severe or extreme cases – a person’s private day-to-day battle with the sometimes strange way their mind works doesn’t make for such good stories.

Nevertheless, battle is the word I would use, especially at the moment as I am still learning about the condition and have not yet had time to identify the best ways to manage and cope with it.  I’m still getting accustomed to the diagnosis to be honest and the change of perspective and mindset that entails compared to suffering with curable problems.

So how does it affect me day to day?  It varies hugely, some days it does, some days it doesn’t at all, depending on what I’ve been doing and what life throws at me (same as anyone else really).  There are all kinds of little things all the time, most of them minor and relatively quickly dealt with in the grand scheme of things and troublesome mainly because they happen so often and I just can’t seem to change or manage my reaction, but along the way there are things that are a little tougher.  I thought I’d share a couple of examples from the last two weeks.

I have been married to Sally-Jayne for eight years now, but despite our closeness and the way we have loved and supported each other through illness, career changes, loss of parents and much more, I am incredibly insecure and needy at times.  People with Aspergers often struggle to pick up on non-verbal communication and find it hard to empathise with others, and this makes relationships tough. I can’t be secure that Sally-Jayne loves me and wants to be with me just by how she acts and by the “atmosphere” in the house. I need definite reassurance of it, which is hard for her and me.  At the same time, I have a pretty much constant dread that she will leave me, either because of something I have inadvertently done – did I mention that Aspergers can make you very self-obsessed so that you don’t give full attention to other people’s issues and see everything solely in terms of its impact on you? – or because the strain of living with a husband with AS has just got too damned much.  That can come out in quite extreme ways, as it did just before Christmas.  I’d been to the gym and she was out unexpectedly when I got home. Now she assured me she had told me she was going out, but I didn’t hear or get this (oh yes, AS makes it hard to focus on and differentiate between two sounds at the same time, so if someone is talking to me while music, radio etc. is on I can’t tune into both, I have to turn off the music to have a conversation or the person has to attract my attention).  So when I found an empty house, I simply went to pieces. I spent 90 minutes crying, shaking, trying to work out what I had done to push her over the edge.  I was alternating between manically going from room to room and curling up on the floor.  After a time, my mind even started planning how I was going to cope on my own in the future.  It felt that severe, and that final.  Of course, it was no such thing, she had gone to deliver a Christmas present to a friend and returned home in due course to find her frantic, gibbering wreck of a husband.

And here’s another example.  For Christmas dinner we had booked into our local Indian restaurant, where we know the owner and staff very well.  Late on Christmas Eve, I received a text from the owner asking if we could possibly go an hour later than booked.  Now this was not, in theory, a problem. We had made no other plans for the day at all, and it really did not make a jot of difference.  Except to my Aspergers mind, where it was a huge issue.  I need structure and routine, and to know where I’m going to be and when as far as possible.  So even though the rest of the day was unplanned (or maybe because of that), somebody trying to rearrange the one fixed thing was serious.  Rather than just accepting it as most people would, I was upset, angry and confused.  It made me cry, I was shaking, it stopped me sleeping, I felt physically sick. Anyone who has wondered why I like to make definite plans and pin people down to dates and times to meet or do things might now understand – this is what can happen when a routine or arrangements are changed.

Hmm, not looking so normal now, hey?  But these extreme reactions to everyday events are a regular part of our lives – “meltdowns” is the term most people in the Aspergers/Autism community use.  While mine are much less severe than others who suffer more extreme forms of the condition, of course they have an impact, on me and on my wife.  It’s not just the reaction itself either.  Once I’ve calmed down, I have the secondary reaction.  That is where I get angry and frustrated with myself for “letting myself” get into such a state over minor things, and for putting my wife in a position where she has to look after me and talk me down.  In fact, I would honestly say that I hate myself for it, and that sometimes feels even worse than the initial response did.  There is always a part of me that feels as though me having to deal with it is one thing, as it’s my condition, but it’s unfair and unreasonable to expect other people to have to cope.

As I said at the beginning, it’s still very early days since my diagnosis.  There are experts out there who can help me and, also extremely important, help couples in our situation to deal with the impact on their relationship.  I’m very fortunate that I have an appointment this week with an adult support worker from our local support organisation (Autism West Midlands).  They can offer me help and advice in how to cope more effectively with managing the condition now I have a firm diagnosis, and hopefully in time this will moderate my reactions to things and make it easier for those around me too.  Getting to grips with some of the bigger issues that impact on my life and relationships will be a big step towards accepting the condition as a whole, and the more minor things it brings up every single day of our lives.

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My intention is to write a series of blog posts outlining what it means to be diagnosed with Asperger Syndrome and my progress in dealing with it and learning to cope with it as time goes on.  This is for several reasons, firstly it helps me to write things down, secondly so that people I know will have a better understanding of me, and finally on behalf of everyone with the condition. I am fortunate, yes I have Asperger’s but my written and verbal communication skills are good, which gives me the opportunity (and, I feel, a kind of responsibility or obligation) to write about AS and related issues, with the aim of increasing understanding and acceptance of it.