Just get on with it

I’ve been told recently that “you just have to get on with it” when I’ve explained about my Asperger’s.

It’s very clear that the person meant well, and to put things into a slightly wider context, what they were really saying was that you have the cards that you’ve been dealt, and you just need to accept that and get on with things and make the most of it. They don’t want to see me get dragged down by my thinking about AS, and they also feel that if I put a bit more effort in, I could be that bit more normal. “You can learn”, I was told.

I appreciate the sentiment, but there is a clear misunderstanding about AS by the person who passed the above comment, one that I struggled to tell them verbally at the time.

I can perhaps best illustrate it by looking at my past. A year ago, I didn’t know what Asperger’s was. I was 35 years old, and had always muddled the best way I could through life. Muddled is an apt word – I have always seen the world, and how people interact and get on with things in particular to be a little odd. I always had, however, just got on with life, in the best way I knew how.

I’ve struggled at times with loneliness brought on through a seeming lack of ability to make and keep friendships with others. My social life through University and through to this day has been dismal. In a typical month I’ll socialise outside of my family no times whatsoever.

My life at work has been mixed. I work in IT, so changing jobs every couple of years, which I have done,  is not seen as much of a problem. A couple of times I’ve been made redundant, but on other occasions my leaving has, if I’m honest, been sparked by me getting a bad reputation with my bosses. Almost everywhere I’ve worked I’ve ended up causing trouble in one way or another. I don’t set out to do it, but I hate to see dishonesty and stupidity in management, and I’m somewhat infamous for writing my thoughts in an email and sending it off to management. This rarely goes down well, despite my best intentions. The guilt after the fact is intense. I’ve had a boss use this against me in the past, and in general it’s ended up hastening my exit.

Anxiety has followed me around for at least the last 25 years. At times it’s not so bad, and at other times it’s crippling. I find it difficult to communicate via the phone at work, and resort to email whenever I can. Face to face works for me when it’s just me and one other person, but larger group meetings are tricky due to sensory overload issues.

So, to make this clear, I have spent 35 years oblivious to my AS, and in effect just getting on with life. Whilst there have been undeniable personal triumphs – I have a wife, two kids, and I’ve always been employed – I think the above shows that I’ve experienced a good deal of problems that are directly attributable to my AS.

Despite making the best of things I’ve failed to make many friends, and I’ve lost many of those I did make. I’ve got no social life to speak of, and I make trouble at work for myself despite my best intentions. I have an anxiety problem that at times criples me.

I’ve spent a good deal of time over the last few months mulling over my AS, and it’s this inward looking that has lead to the comments of “just get on with it”.

Only by understanding my Asperger’s can I move on and start to find strategies that help improve the areas of my life that I find difficult.

So whilst I appreciate the sentiment in being told to “just get on with it”, you are going to have to excuse me whilst I spend whatever time I need to learn and come to terms with what makes me the person I am.

Then I can get on with it.

My Rock

Who needs friends when you have a rock?

I’ve thought this more than once over the years.

It all started with my first serious girlfriend, at the age of 14. When most people start to discover the opposite sex, they discover a whole new set of emotions to deal with, and I was no exception. Along with all of the usual ones, I also discovered that knowing someone intimately lead to a feeling of fulfilment and calm in me that I’d not experienced before. I felt safe and complete. This was what life was meant to be like.

Six months later the inevitable happened, and we broke up. I felt bereaved, and was inconsolable for weeks. It felt like the stability in my life had suddenly been removed, without warning. My ex-girlfriend, in common with most other 14 year olds wasn’t too concerned with our split, and within weeks was seeing someone else. This just rubbed salt into my wounds.

Now, you might call this the normal response of losing a loved one, and of course that is part of it, but this was about losing so much more. That first serious girlfriend of mine had become my first rock.

I’ve always found making friends to be difficult. Keeping those that I do make has also proved troublesome – I’m bad at the usual chit-chat that people use to communicate. In keeping my thoughts to myself I’ve let many friends drift away over the years.

This is where my rock comes in. By having a very close relationship with someone, I’ve been able to concentrate my limited capacity to communicate openly and share with that one person. In return, the other person has reciprocated. Suddenly, with this wonderful harmoniousness between two people in place, it’s not mattered that I don’t have any other friends. My rock is my friend, my confidante, my lover, everything that I need.

After my first came my second. Once again, this was in the form of a girlfriend, and this time the relationship stuttered to a halt after eighteen months or so. I was left feeling broken, battered, and not knowing where to turn.

The pattern has continued ever since, one rock at a time, and mostly with the rock being my then girlfriend. These days my rock is my wife.

To answer my own question that I posed at the top, everyone needs friends, even me.

I can see that these days, and I’m starting to make more of an effort to engage with people who are suitable friends. Of course, having AS means that I find this difficult.

I also realise that being someone’s rock isn’t easy. People with Asperger’s aren’t easy to live with – there’s no getting away from that fact. We need partners who understand and tollerate, but even the most understanding person in the world needs time out. Without friends to fall back on, it’s easy to see how your rock might not appreciate the constant intensity of, well, everything that you place on them.

I owe all my rocks down the years a debt of gratitude, but my wife, who has been there during the bad times as well as the good deserves the biggest thanks. She is wonderful.

Now, if only someone could give me a definition of ‘friend’ that made sense to me…

How difficult it is to explain

A friend pointed me in the direction of an article she’d heard on BBC Radio 4′s Woman’s Hour yesterday. It discusses an up-coming Autism Bill in the UK parliament that aims to make UK local authorities provide better access to help to those with Autism Spectrum Disorders.

Using the BBC’s excellent Listen Again feature, I was able to catch what was said, and for the next week, you can too via the link from here.

It’s an excellent piece, and I’d not previously heard about this Autism Bill. I’ll keep an eye on how it proceeds.

The most interesting part for me was at the start of the piece where the interviewer spoke to a young woman called Robyn who has Asperger’s. Robyn describes how she has problems with anxiety, and with over-thinking about things. I was struck with just how similar her perception of the world was to mine – a rare thing for me to find. She explained how she was receiving some unpaid help from a life coach specialising in people with AS, and how she felt that organised short term intervention from local authorities would be of benefit to many people with an Autism Spectrum Disorder.

The interviewer commented on how articulate she was, and wondered whether Robyn could appreciate why local authorities found it difficult to deal with people such as her who whilst having difficulties stemming from their ASD, clearly did not have learning difficulties nor straight forward mental disorders. Robyn said she could easily see the problem, and so can I.

Indeed, this problem has got me thinking. I can easily understand and empathise with Robyn’s difficulties in interacting with the world, but I wonder whether many people without AS or other spectrum disorders could.

If you just listen to Robyn’s words, she says that she has problems with anxiety, and with making and keeping friends. To someone who doesn’t intimately understand AS, this just sounds like someone who needs a bit more self confidence and perhaps some counselling to help her with her anxiety.

But that’s not it is it? Robyn is saying far more than this, but you have to read a little between the lines, and could easily miss it. If you understand AS, then you hear the underlying patterns in what Robyn is saying. You know that these are issues that Robyn is always going to have, even if her anxiety is effectively tackled. She’s always going to think intensely about things to the point that it prevents her from doing anything else. She’s always going to have trouble making and keeping friends. It’s the words that Robyn doesn’t quite say that are the really important ones.

I’m not surprised that Robyn found it difficult to find words that described her AS well. I have the same problem when writing this blog. I know how AS works and what it does to me, and despite being fairly articulate, I have a hard time describing how AS actually works to other people. When I re-read the articles I’ve written, I often get a sense that whilst I’ve managed to touch upon something, I’ve failed to explain it well enough for others to get it. It’s almost like AS can’t be fully described in words, because the words we have describe a non-AS world. Maybe that’s why I rely on metaphor to get my points across so frequently. Does that make sense to anyone?

Dealing with it

I was keen to start this blog because I’ve felt for a long time that writing is my most successful mode of communication. I find that I can really express my thoughts and feelings well this way – that my written words tell the story the right way. I was building up a lot of thoughts about my newly discovered AS, and had no means of expressing them. The thoughts were building up because AS had become one of my Special Interests – and Special Interests need attention – they need to be thought about and explored.

This blog has become my mouthpiece for explaining my Asperger’s, and as I’m still dealing with the discovery, at times I find I’m writing things that end up feeling quite uncomfortable.

That’s happening quite a lot right now. I’m having quite a hard time coming to terms with things I’ve always done, and ways I’ve always felt. In the past they were just me being me, but now they are so obviously very different from the norm. I’m feeling shocked.

I’m also feeling a good deal of background anxiety at the moment, which keeps sticking it’s head above the parapet and giving me a bad day. Anxiety is my big co-morbid condition, and I’ll write more about it at some point.

I’m feeling strangely blind – how could I spend 35 years being aware that I was different, yet not seeing how profoundly different I was? Did I really not see it, or did I just do a good job of burying the uncomfortable truth? Or maybe the anxiety is just beating me up about it.

I know the uncomfortable days will pass, and that if I take a couple of days away from thinking about AS that the anxiety will ease too. Ultimately, I feel that I have to push through this to make sense of it. I understand a lot about Asperger’s these days, and some about how it affects me. One day I’ll make sense to me, without the anxiety and without the feeling that being different is bad. I know this is the case because I spent 35 years feeling that way before I knew what AS was.

My point in writing this is to show that coming to terms with Asperger’s isn’t always easy. I read a lot in other blogs from people who have recently been diagnosed as adults, that suggests that they are finding the adjustment easy. Maybe they are, or perhaps they just prefer not to share the difficult bits. My desire to express my thoughts via writing and my anonymity in this blog mean that I feel able to express the more difficult aspects of my condition with relative ease.

If you are discovering your Asperger’s right now, then you have my best wishes. If you are finding the road to be a rocky one, then I hope you can take comfort in the fact that you aren’t the only one. I for one, feel safe in the knowledge that in time the road will get get less rocky.

Using social media with AS

I use social media. Actually, I use quite a lot of it – Twitter, Facebook, LinkedIn and  MSN. Until recently, I was also clamped onto a couple of IRC channels.

I started using social media as part of my camouflage, way before I knew consciously that I even did that. I felt the need to fit in – my geek friends were all using IRC, and despite it feeling a very odd thing to do, I joined them.

Instant Messaging was a work thing – it was the defacto way to communicate in the office between people who weren’t sitting next to each other. So over the space of a couple of years, I got used to communicating with people via MSN and IRC. This was almost exclusively a work-time thing – I didn’t use computers much at home.

Over time my usage has morphed. Web 2.0 is here, and with it have come new and more “social” ways of interacting. First came LinkedIn, and then Facebook. More recently I’ve embraced Twitter. My reason for using these sites has changed a little too. I still use them as part of my camouflage – to make me appear more normal within my peer group. These days, however, I’ve also discovered the power of self expression via social media. I use Twitter in particular to express my thoughts. I comment on things I’ve read on the web, or things people have been talking about.

This perhaps shows how my use of social media is only a facsimile of how people normally use it.

I don’t use it in a very social way most of the time. I don’t add lots of applications to Facebook, nor do I throw snowballs or cows or give gifts to friends.  I don’t have a funwall. Now that I’ve built a peer-group at LinkedIn I no longer log in to keep it up to date. On Twitter, my updates are factual and stating opinion most of the time. My Twitter @replies are sparse and again usually state fact about things rather than being light, jokey, and, well, social.

What about IRC? Well, I recently decided to stop using it. With my daily use of Twitter and to a lesser extent Facebook, I found IRC just too much. I also found it never fitted my way of interacting very well. I felt compelled to scroll back and read what people had written whilst I was away. I needed to know the story – what people had been doing and saying. That was just too much of a burden. I used to justify my use of IRC with the rare times that I used it to actually interact with people rather than being the silent lurker. This was usually to ask a question of someone in particular and IRC wasn’t good at this mode of interaction. If the person wasn’t present, then they may or may not see my question when they returned, depending on much traffic there had been on the channel since. If they did see and then replied, I may or may not have seen their reply, for the same reason. Twitter and to a lesser extent Facebook both handle this non-real-time style of disjoint conversation far better and more reliably.

I quietly and without fuss dropped off my usual IRC channels a few weeks ago. I’ve had a couple of pangs of neediness for it in my more anxious moments, but I have to say that on the whole I’m not missing it.

Social media can be used by someone with AS.

Just don’t expect someone with AS to use it in the way you would use it.

Slumdog and me

This isn’t the sort of article I thought I’d be writing for this blog. It’s something of a movie review. At the same time it isn’t – it’s really of a review of my reaction to one.

I saw the film Slumdog Millionaire ten days or so ago, and have been musing on and off ever since about how it affected me.

Wow. What a powerful film. I’d not read anything about it before my wife and me went to see it on an icy Friday night. I knew it was about a young man from the slums of an Indian city winning the TV program Who Wants to be a Millionaire, but that was it.
Read more

Extrapolating how I work

Here’s what I do. I make it up as I go along. I bullshit, if you like.

Kids with AS are often referred to as Little Professors, and it’s easy to see why. When it comes to subjects that they are interested in, they can talk at you all day about it. They appear to know everything there is to know about the subject. The things is, generally they don’t. They make stuff up, and extrapolate, yet present everything with that same confidence that makes you think that they know what they are talking about.

I did this as a kid, and as an adult, I still do. The reason is that this is the way I learnt to do things, and I never really appreciated until recently that it might not always be the right thing to do.

Thus, when I get carried away I’ll embellish things that I say with facts and figures that sound right, but are actually made up. I feel justified in doing so, because in my head, the extrapolation of data that I do know, into something that might be true is valid. I know that’s going to sound wrong and illogical to many people, but, well, that’s just the way it is, and there’s no point in me trying to deny it.

Much of the time my extrapolation causes no harm, but from time to time I’ll do it with someone who knows more than me about a subject, and I’ll simply end up looking foolish at best. At worst, I’ll get thought of as a bullshitter and will lose the trust of that person.

There are of course positive aspects to this too – sometimes my extrapolation isn’t bullshit, and allows me to make connections I’d not previously seen, or to take a leap of faith about something. When it works this way, it’s one of the most useful of my AS traits.

The above behaviour is well documented in AS literature, but the reason behind it isn’t. I’ve been wondering why I approach knowledge in this way, and I think I may have found an answer.

It all boils down to how I learnt to cope with my invisible and undiagnosed AS, and in particular with social interaction. As a child, I copied how other kids interacted. I had to do this to fit in, because I had little in the way of natural ability with social interaction. The sophistication in a lot of social interaction didn’t make sense to me then, and a good deal of it doesn’t make sense to me now, although I’ve learnt over the years to rationalise what I see, and to disguise my lack of understanding.

So, as a child, I spent a good deal of time observing other children, and then recreating what I saw in order to make sense of it. At first, much of this recreation was in my head. I tried to understand what I should say and do, by replaying the interactions of myself and my peers in my head. Eventually, my take on these events was replayed – when faced with a social scenario I acted out what I thought would be appropriate responses, based on what I’d seen my peers doing.

This is the key, I think: When I didn’t understand the expected responses in social situations, I watched what people did, and stored away the responses to use later. Faced with a similar scenario at a later date, I extrapolated a response from the data I had available.

There’s that word again – extrapolate.

Extrapolating data to camouflage my weakness in social interaction worked well, and I use it to this day.

Perhaps the reason that I sometimes pass off extrapolated bullshit when presenting knowledge is simply because extrapolation of data was how I learnt to cope with my poor social skills as a child. I made up answers to my social problems based on the data I’d gathered through observation of my peers, just like I present made up data as fact when I get carried away.

This article, of course, is also based on an extrapolation of data, and as such could equally well be bullshit. Is it? Well, I don’t think so. I think this falls into the category of making connections and leaps of faith. I hope you agree.

Seeing both sides

Well, I’m glad it’s not just me. Rachel Cohen-Rottenberg on her Asperger Journeys blog has written a lovely article about how she sees both sides of the story.

Rachel writes:

When I told the OT about this experience, she nearly started to cry. She said, “This is part of your sensitivity to the world. You can stand in everyone’s shoes. It’s a gift, but you have to balance it by reading about something positive and uplifting, too.”

I’ve always had this ability too.

I have to be honest, and say that I find it difficult to see it as a gift. The problem I’ve found is that by seeing both sides in a conflict I then find it impossible to side with one person over the other. I end up sitting on the fence, as anything else would cause me too much internal conflict.

Over the years this has caused considerable friction with friends and work colleagues. With my Aspie nature of being easy to talk to and confide in, I’ve often been told of some perceived injustice by friends and peers alike. The teller of the tale is after empathy and probably sympathy too, but I’ve usually not offered it. Instead, to get the logic right in my head, I’ve asked for more info about the situation, and ended up being able to see both sides of the story. Armed with this knowledge I’ve found it impossible to take sides.

I can see how those who confide in me find this annoying. If you feel that you can confide in someone, you expect them to empathise with you when you do. Until I discovered my AS, the friction I’d end up causing in these situations caused me considerable surprise and anxiety, pretty much every time it happened. I couldn’t see why my response caused the trouble it did.

These days of course, I have a new frame of reference, and I can take more care. I can’t say that I’m likely to sit on the fence much less frequently – doing that would cause me profound discomfort – but at least I see why it happens, and can take Rachel and her therapist’s advice and de-stress myself afterwards by looking at something positive.

John Elder Robison on neuro-psychological testing

John Elder Robison recently wrote in his blog Look me in the eye about the neuro-psychological diagnosis of Autism Spectrum conditions, and how he feels this must inevitably be a positive step for those on the spectrum. He’s since followed this article up with another, that explains how in light of comments that he’s received he can see that some people can take negative things from the experience.

I think that John has great insight into his condition, and hearing the point of view of someone else with a similar diagnosis to myself is proving to be extremely useful, as it allowing me to make connections with my own symptoms.

A couple of points in the two articles really stood out for me, and I thought I’d expand on them here.

In his original article, John says:

There are some who say, “There’s no such thing as normal!” To those people, every single kid has a diagnosis waiting to be found. I don’t know that I fully agree with that, but I do think knowledge is power, and the more you know about yourself, the better off you are.

I agree completely.

I’ve always known that I was “different” from my peers, and in that sense I’m not normal. My wife has said to me recently that there is no such thing as normal, so John’s words struck a chord with me. My wife’s point of view is perhaps the opposite of Johns, however. By “no such thing as normal”, my wife means to say that no-one needs a diagnosis – you are who you are. She sees the label of not being normal as a negative thing, when in the end everyone is unique.

Whilst I understand why she feels this, I think she misses the point – it’s true that everyone is unique, but if you look at people in general then they tend to behave and react in broadly the same ways as each other. here are countless unspoken rules about how human interaction works, for instance. I often don’t fit this mould, and in that sense I’m definitely “different”, or if you prefer, “not normal”. To me the label is simply fact, and not something with either positive or negative meaning.

This is important to me, because if I considered myself to be normal, then I couldn’t possibly be on this road of self-discovery on which I now find myself. I know and appreciate that I’m different to the norm, and I’m keen to discover and understand the many subtle ways in which I do differ. Only when I have done this will I have the knowledge I need to make changes in my life that improve it and broaden my horizons.

Knowledge really is power.

In his follow-up article, John says:

When I wrote my original post, I thought how much diagnosis meant to me by helping me understand exactly how my mind differed from other minds around me. For example, the simple insight that I miss nonverbal cues was life-changing. I seized upon the specific behavioral issues and set about constructing a better life. It worked. Words cannot express how much better my life is, thanks to the self-knowledge I’ve gained since learning about my Asperger’s.

For some other people, it does not work that way because they become sidetracked by preconceived notions about “having a diagnosis.” Instead of looking at their own specific issues, they look at broad statistics associated with the diagnosis. They see phrases like, 32% can’t live independently, or 66% never get married and have a family. They become trapped in generalities rather than focusing on specific issues to make their own lives better. They interpret those general statistics as a prediction for their own future, when it’s nothing of the sort.

This sums up brilliantly my wife’s major worry about my investigation of AS. She worries that I will get caught up in the general statistics surrounding the condition, and that it’ll just drag me down until I become one of the statistics. She feels this way because the sort of statistics John mentions above were amongst the first things I found when I started researching AS on the Internet. I spent some time explaining them to her, and she can’t forget them.

There is no getting away from the fact that some of these figures are devastating to take in when you first realise you have AS. It’s easy to see how they can be devastating to loved ones too. I think it’s important to note, however, that I’ve proven throughout my adult life that I can live independently, and I have managed to find myself a wife and have two kids, so the negative aspects of these statistics don’t apply to me personally.

There’s another reason why my wife worries about me falling foul of the gloom of generalities. It’s because I have no swift answers for her. Investigating AS, and thus my differences from the norm has become one of my Special Interests, and as such it consumes a good deal of my spare time. My wife can see this, but she can’t see much in the way of answers or conclusions being reached. I’ve been on this road for four or five months now, and I’m still researching. This worries my wife, perhaps understandably.

I feel, however that I make progress almost every day. I focus on small things at a time, and then try and jot down my thoughts in this blog. Each little connection feels like another piece in the large jigsaw that describes my life. I hope that as time passes my articles here will form something of an encyclopedia of my understanding of AS, and thus my understanding of myself. In time I hope it will start to paint picures of how I’ve changed too – how I’ve been able to improve areas of my life due to the insight I’ve found.

I’ve not got a formal diagnosis, but I didn’t need one to start my journey. An informal self-diagnosis was enough to set me on my own personal road. Does that mean that I’ll never feel the need to get formally diagnosed? Only time will tell.

Making small talk

I can make small talk.

Here’s the thing though – you have to start it.

If you chit chat with me, you’ll get a response.

What you won’t likely get is a follow up. For instance, if you ask me how my day is going, I’ll say something like ‘oh, fine’. I most likely won’t follow this up with, ‘How about you?’, and it’d be really unusual for me to ask the question first, unprompted.

Making small talk doesn’t occur to me.

I mostly deal in logic and fact rather than in emotion, and so my answers to small talk tend to be skewed towards this.
An example, from this lunch time. It’s been snowing on and off for several days:

Shop Assistant: ‘Are the footpaths outside easier to walk on now?’

Me: ‘Yes, but I’m glad I have my walking boots on. The High Street pavement has been gritted, but the side roads are still pretty slippery.’

End of conversation. Facts stated. No follow up. And you certainly wouldn’t have caught me offering up this info without having been asked.