Relationships with women and tales of regret

When I was growing up, my relationships with women were unusual. This article covers a time line that stretches from my early teenage school days, right through to my mid twenties, and as such, covers situations that happened at school, university and in my early work life. This article is deeply personal, and contains mild sexual references – if this isn’t your thing, then you may want to skip this one.

Throughout this time in my life I was ignored by a great many of my female peers – almost as though I was invisible (something, incidentally, which Rachel writes wonderfully about here). In a sense, that didn’t bother me. I felt no great desire to interact with these young women – whilst many of my male class-mates and work colleagues found them to be hugely attractive, I didn’t.

Those that did interact with me – well that was a completely different story, and one that perplexed me until very recently. Maybe once or twice a year on average, someone who I was either at school or work with would discover me. They would always make the first move, and start talking to me. Whilst I find group conversation difficult, I have always enjoyed talking one to one with others. I can manage this sort of conversation quite well, and it allows me to feel a connection with others. Over the years I often found myself doing quite a lot of it with young women.
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Maybe we are not so different…

This, in a sense, is a follow up to the article I wrote earlier about my experience with dipping into autism advocacy. If you haven’t already done so, it would make sense for you to read that article first.

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Imagine if you will, a hypothetical mother. She has an autistic son. She believes that her son was developing normally, but that sometime around the time of his early childhood injections, he started to regress with the signs of autism. She associates the two things, and now absolutely believes that the injections caused her son’s autism. This mother cares deeply for her son, and would do just about anything to reverse that regression, turning him into a normal child once more.

Her son is now seven, and has been receiving an array of treatments, including chelation and the use of a hyperbaric chamber over the last five years. The mother sees some signs of treatments working every now and then, but her son is clearly still autistic. She has learned not to trust mainstream Doctors, after all, they believe in the shots that gave her son this condition. Instead, she is more inclined to believe unconventional specialist Doctors who have brought their own treatments and potions onto the market, with very encouraging results promised by them. To hell with the cost – if it helps her son, it is worth every penny.

Now, this really isn’t meant to represent anyone in particular. It is just meant to give something of a picture of a mother who is prepared to go to any length to reverse a condition that she perceives her son has developed rather than inherited. If you are reading this, and think I’m talking about you, then I’m not, I assure you. I’ve just created a stereotype based on what I’ve read. It may well be an inaccurate stereotype, but I’m sure there are some parents out there who the above fits very well.
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Sitting on the advocacy fence

I got a shock last week, and it has made me realise that I have been subconsciously keeping quite a tight control over what I read and how I publicise my blog.

In a blog article I wrote a week or so ago, I lamented about how few hits the blog was getting. I felt that over the last nine months or so I had grown into a confident blogger, and now I wanted my words to be read by more people. To try and put this into practice, I restarted my AS twitter account, and also started commenting on more blogs – some of which have been on my feed reader for a while, others of which were new to me.

Commenting on other people’s blogs is something that I started out doing, but which I have become more and more tardy with in recent months. Those blogs that I have tended to comment on over time are from folks who present to the world in broadly the same way as me, and whose blogs also have a distinctly this is what it is like for me tone to them. This type of blog, of course, is only a subset of the autism-related blogs out there on the Internet. Many others take a news-like approach or advocate autism, some rather militantly. Perhaps, it turns out, there is a reason why I’ve steered away from these sites.
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Awareness versus propaganda

I’m glad I live in the UK.

Here in the UK, autism isn’t well understood outside of families that have been touched by it. I believe it’s still very much seen as a condition in kids that causes them not to interact with others, and to rock backwards and forwards. Many people in the UK will have heard of Asperger’s, but will have no idea what it is.
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Autism rates in adults

Hooray!

This article, from the BBC News website speaks for itself.

The mechanics of visibility

It’s a funny old game, this blogging lark.

When I first had the idea for this blog back in January, I was very unsure of myself, and, indeed about what I would be able to write about. My first postings, back in the early spring were tentative, and I was relieved that no-one was watching whilst I was finding my feet.

As time passed, my confidence grew in my ability to express myself and occasionally produce some nice and/or interesting bits of writing. Satisfaction started to set in, and I grew somewhat addicted to assembling the jumble of thoughts in my head into coherent articles.

People were starting to take notice. Some have come and gone, others have hung around for the longer haul. New faces are always welcome, and it’s great to see.

In time I’ve turned from a shy and unsure blogger into a confident one, who wants his words to be read by others.

But frustration has started to hit on the visibility of the blog. I made a concious decision to host on my own server because I wanted control, and to have the ability to muck about with my own settings, and feel pride in having created my own hosting solution. At the time, this seemed like a great idea, but I can now see the drawbacks.

My blog is not part of a community.
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Apostrophes and other problems

I seem to have mislaid my apostrophes. Oh, and I keep wanting to spell apostrophes as apostrophies.

As a child, my spelling was never very good, and whilst I tried hard to learn the rules surrounding grammar, apostrophes, and how to write speech using quotes, my execution was never very good. I could write a good story, but I couldn’t quite master the execution properly.
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A new chapter

Yesterday morning, I emailed the information email address of a private counselling clinic in Sheffield, near to where I live. The clinic offer a Developmental Disorder Assessment for those who suspect they have an Autism Spectrum Disorder. The man behind both the clinic and  assessment is a very well respected psychotherapist and professor, which ultimately helped give me the confidence to write.

I was concerned as to whether a GPs referral was strictly necessary, so in addition to giving a short(ish) background about myself, I stated my concerns and asked I what needed to do to get the ball rolling. As I was emailing a generic address at the clinic, I didn’t get my hopes up of a quick reply, but to my immense surprise some forty minutes later, a reply was sitting in my email inbox, not from the clinic administrator, but from the good professor himself.

A GP referral was necessary, and perhaps for the first time, I appreciated why. A diagnosis doesn’t necessarily come unaccompanied. There may be recommendations for further treatments to feed back to my doctor following the assessment.

So, after lunch, I phoned my GPs surgery and asked for an appointment. Here, things didn’t go to plan. My usual GP, it seems, has retired. Oh. Thinking on my feet, I realised it just meant that I’d need to explain a little bit more history. An appointment was offered, with a woman doctor that I’ve not met before. For the next morning. I wasn’t expecting that – next day appointments are usually like gold dust, and a wait of several business days is not at all uncommon. I was a bit phased by this, and accepted the morning slot. I booked a double appointment, just to be sure that I’d have time to explain myself, without feeling rushed.

It was only after I was off the phone that it hit me that I was going to go and ask for a diagnosis the following morning. All of a sudden I was filled with doubt and thoughts of cancelling – after all, I wouldn’t have the time to prepare what I was going to say, and to print out supporting documentation. My wife came to the rescue. She told me that I didn’t need any supporting notes and that I knew what I was talking about. I’d be fine. I knew she was right. It’s how I tend to approach job interviews – I don’t prepare as fully as I might, instead relying on an ability to pull the knowledge I need out of my head when asked.

I slept well. Amazingly.

This morning, as the minutes passed, I grew more and more nervous and anxious. My mind was full of questions and of trying out answers. I made it to the surgery ten minutes early and then sat and tried to calm myself. I remembered the seven-eleven breathing technique I’d been taught when I went for counselling to help my anxiety. It didn’t feel to be helping at the time, but I’m sure it did in reality.

Whilst I was waiting, the doctor appeared in the waiting room, and grumpily called someone. Uh oh. That didn’t sound good. I tried to calm myself with the observation that the doctor had rung her intercom bell to alert the receptionist that she should send in the next patient, but that the receptionist hadn’t responded. Just maybe that was why the doctor was grumpy – she’d had to come and find her next patient herself.

All of a sudden it was my turn. I wandered dazed down the corridor containing the consulting rooms, and at first I couldn’t find the right room. It turns out that they are numbered in a strange order, and after a short false start I found the door I was looking for.

The next twenty minutes passed in something of a blur.

In short, the doctor was sympathetic and listened carefully both to my concerns and to the descriptions I gave of some of the ways in which AS affects me. After about fifteen minutes, she made it clear she wa happy to refer me for a diagnosis, but at this point she stumbled at little. She realised that she had no idea where she could refer me to. This was my cue to chip in and say that I’d found a clinic in Sheffield, which went down well. She then wondered out loud if the clinicians did NHS work, and explained that they could put a case forward for me to be seen on the NHS out of area, if the clinic or those working there undertook NHS work. I explained that I was fully prepared to meet the cost of the consultation privately, and thus the NHS and special cases wouldn’t be needed – so long as she was happy to do the referral. She agreed – she’d write to the clinic to refer me early next week.

I let out a very audible sigh of relief, and felt close to tears. The doctor smiled.

I realised that in many ways I’d been working towards this moment for a year. If you count the time I spent understanding my anxiety then the road to here has been more like two years.  To be sitting with a doctor who has just said that she understands how Asperger’s affects me and is happy to refer me to get a formal diagnosis was just wonderful.

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This, of course isn’t the end of the story, by any means. It is the start of a new chapter.

Assuming the diagnosis goes the way I expect, there will be a whole new set of realities and challenges for me to face. The doctor mentioned the possibility of more counselling, perhaps as a couple with my wife, and maybe to help with my parenting skills too. There will also be that small matter of having a disability on my medical record to face up to and deal with, and the devising of strategies of when and if I need to let people know.

Of course there is still that tiny little doubt in the back of my mind that the diagnosis will not return what I’m expecting. That too would take time to re-adjust from. I’d be fibbing if I said that it didn’t worry me just a little.

Overall though, I’m feeling very positive about the whole experience and about what the future holds. A large part of this huge weight I’ve been carrying feels to have gone.

You walk funny

It’s often said – indeed I’m sure even I’ve said it more than once – that Asperger’s is a hidden condition. What is meant by this, of course is that you can’t tell that someone has it simply by looking at them.

A great many people, it would seem, don’t believe in things they can’t see. I can understand that point of view – the world seems to be a much simpler place if you take everything you see at face value. If the world has taught me one thing, though, it is that you can’t take anything at face value.

From time to time, people have seen my Asperger’s in every day life, and have commented on it.

“You walk funny,” said one of my so-called friends at school. I’d maybe have been twelve at the time. I did walk funny – well I had assumed I did for some time, because I wore out the soles on my shoes in an unusual way, certainly in a different way to that of my peers. The jibe still hurt though.

Maybe a year or two later, and still at school, I took part in the annual sports day. I ran – slowly – in a 400m race. After coming in at the tail of the field, I made my way back to where my classmates were gathered, only to find them doing odd looking runs and laughing at each other. “You run funny,” one of them said to me. Their mimicry of my running style left me feeling terrible, yet I knew instantly that they were right.

When I was sixteen, my maths teacher took me to one side after a lesson one day, and asked if everything was ok. Actually he went much further than this, and astutely pointed out that I seemed to be suffering badly from stress. “You should try yoga. Really. Give it a go. If you don’t learn to unwind, you’ll end up making yourself ill.”

At some point in my mid twenties, I noticed that the default relaxed position for my face included a frown. By this time I already had deep wrinkles on my forehead, caused by the facial expressions I pull when stressed or anxious – which is a lot of the time. I’m often not concious that I’m pulling a face.

Over the last fifteen or so years, I’ve heard the same thing at least half a dozen times from concerned work colleagues: “Are you alright? Its just that you look really worried”. I’m typically taken aback by comments like this, and require some top notch acting to talk my way out of the situation. I’ll put on an instant huge smile, and make up some tale about being lost in thought about something, rather than being worried. Whilst I may have just been going about my usual routine, they have mostly been right – I will be have ruminating and worrying about something or other, and oblivious to me, it showed on my face.

The one thing all of these scenarios have in common is that people noticed something about me that was caused in one way or another by my Asperger’s. I’m sure that not one of them wondered if what they saw was connected to Asperger’s, however, and why would they? The human condition has many causes for all of the above traits, and people tend to plump for the explanation that they have come across before, and thus seems the most likely.

I’ve avoided what are perhaps the obvious examples of how Asperger’s shows itself here – examples that involve social interaction. Clearly, when I can’t or don’t shy away from a social event, there are often times, particularly towards the end of the event, where I get tired, overloaded, and my acting will start to slip. Indeed, I wrote about one such event recently. But just as I’ve focussed on this sort of trip-up before, so have many others, and I thought it would be nice to show that just sometimes, people do spot the outward signs of AS in other ways.

Asperger’s is a hidden condition, its true. With so many other potential causes of those outward symptoms that people do sometimes see, its easy to see why some people simply don’t believe in it. But if you know what to look for, and you know someone for long enough, just maybe, sometimes, you will see it, even if you have no clue what it is that you are really observing.

Having no-one to turn to

One of the biggest ways in which Asperger’s shows itself with me is my lack of friends. This has always been a problem for me, and I’ve spent most of my life in a situation where I’ve had either one or two good friends, or at times none. Over the years, I’ve come to terms with much of the loneliness that this brings me, but I would still dearly love to be able to hold onto good uncomplicated friendships – something that I find very difficult to do.

I understand many of the reasons why friends are important these days, and yet at this moment, aside from my wife, I really don’t have any good friends. Good is, of course, subjective. What I mean by good, is someone who I can be myself with 100% of the time, who I can be fully open with, and who I’d happily (and regularly) disappear down the pub with, or go out for a hike with, or, well, I’m sure you get the idea.

I’m in this predicament due to my own making. I last tinkered with trying to create a good friend maybe eighteen months ago, and failed. This didn’t come as a surprise, sadly. I find it very difficult to keep relationships going, and in that particular case I ultimately let it lapse after we went out for drinks a few times. In a way, letting people into my inner circle feels very overwhelming. I’m comfortable with my wife being in there most of the time, but with other people, I can see that I’m acting rather than being myself, and I guess I feel afraid to let others  in to see who I really am.

So, what does someone like me do when for one reason or another, communications break down with the one person (i.e. my wife) who is within my inner circle? That’s a very good question, and not one that I have a very good answer for.

There have been a few times recently where, with raw emotions in full flow, I have felt I have no-one to turn to. That’s not a nice feeling at all.

My wife works very hard to understand and accept this monster of a condition which she wasn’t expecting to find hidden inside me. But I fully understand that this isn’t at all easy for her, and there are times when she can’t help me, and would just like the whole Asperger’s thing to go away.

This all makes me see how many people with Asperger’s lack any of the good friends that they need to help keep them make sense of the world. Continually turning the raw emotion and negative feelings inwards must cause a lot of damage and despair, and I feel very lucky that I don’t experience that very often.

Sometimes, I can turn to this blog to express some of the feelings that are causing me problems. But that doesn’t always work either – there are some things that I just won’t talk about here. Whilst you see me as I really am, there are some aspects that I simply don’t write about. That’s usually because for one reason or another it would be inappropriate for me to comment.

If you are one of the handful of regular visitors here who I know in some way other than just through comments, then I hope you don’t feel hurt by this posting. I do consider you as friends, and in lots of ways you do know the real me. None of you are physically located close to me, however, and you all have enough on your plate already without me offloading in your direction. Unfortunately these things rule you out of being a good friend by my own definition. I hope you understand what I mean.