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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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.

A different sensory overload

Here’s an interesting one.

One day last week, I wrote a couple of articles for this blog. They were quite long and intense, and I ended up with nearly 2000 words bashed out in a little over an hour. I felt great. I usually do after writing a blog post. The physical act of typing words out de-clutters my brain and forms logical sentences of the thought fragments that swirl around in my head.

My euphoria didn’t last long though. By the time I got home from work I felt very overloaded, and the evening passed in something of a haze. The next morning, I felt hungover.

I’ve talked about each of these states recently, and have put the cause down to sensory overload – specifically too muich sensory input. But that day, I didn’t have too much sensory input.

Now, it’s probably wise to remember that I ‘see’ much of what I write. Both my long-term and working memories are very visual. So, in writing about how I feel about the diagnosis of Asperger’s, and how I frequently say one thing to people, and then don’t follow through with the actions, I spent a good deal of time playing and replaying scenarios in my head. Visually. I can kind of ‘hear’ the other people talking in these scenarios too.

Could it be that the intensity of generating and seeing all this information in my head and the act of getting it all down in writing caused much the same effect as too much visual, auditory or tactile input does? I can’t be sure, of course, but that is the best conclusion that I can reach. It’s not too much sensory output, as such, yet it is about experiencing a lot of sensory information, albeit internally generated.

A different form of sensory overload.

What do you think?

Is this what we’re all living for today?

Just look at all those hungry mouths we have to feed
Take a look at all the suffering we breed
So many lonely faces scattered all around
Searching for what they need

Is this the world we created?
what did we do it for?
Is this the world we invaded?
Against the law?
So it seems in the end
Is this what we’re all living for today?
The world that we created.

You know that every day a helpless child is born
Who needs some loving care inside a happy home
Somewhere a wealthy man is sitting on his throne
Waiting for life to go by.

Is this the world we created
we made it on our own
Is this the world we devastated
Right to the bone?
If there’s a God in the sky looking down
What can he think of what we’ve done
To the world that he created?

Lovely words – I hope you agree – and absolutely laden with sentiment that I find irresistible these days.

They are the words to a song by Queen with perhaps an obvious title, Is this the world we created…?, which was written by Freddie Mercury some twenty five years or so ago. For perhaps the quintessential performance of the song, click here to see Freddie and Brian perform it at Wembley Stadium in 1986.

Mentioning music in my blog is a first, but it isn’t for the lack of trying. I’ve started a number of articles about the relationship between me and music since I began writing here, and yet somehow none of them have captured the emotion well enough. This isn’t going to be the article I’ve been struggling to write either – that will have to wait – but hopefully this piece will start to give you a sense of just how much music – the right sort of music – works on me.

Is this the world we created…? only popped back into my life a couple of days ago, after a hiatus of perhaps fifteen years. I’d forgotten about it’s very existence, and only rediscovered it again by accident, on one of my follow-the-link sessions whilst using the Internet.

Having clicked on the video link, the opening chords sent a chill down my spine, and made the hairs on my arms prick up. I knew this song. I knew it was good, but I had forgotten just how good it was.

I was in something of a sad and reflective mood – I’d been reading with some disbelief how it was nearly eighteen years since Freddie had died. I found that incredible.

I remember hearing about his death almost like it was yesterday. For me it was one of those moments that stays with you forever. I was at sixth-form college, and I’d heard the news on breakfast television, and then again on the radio on my walkman on the bus to college. I remember feeling sad, and disappointed that someone so wonderfully charismatic and influential had been taken away at such a shockingly young age – Freddie was only 45 when he died.

When I watched the above video clip for the first time a couple of days ago, the sense of loss I felt was immediate. In two and a half minutes I had been reduced to big choking tears. I watched it a couple more times, and really cried hard for a few minutes.

What was I crying about? A very good question. I felt the loss of something. Was it the loss of a teen idol all those years ago making itself finally felt? Perhaps there was an element of that there, but that wasn’t really it.

Was I mourning my loss of youth? Well, youth clearly has a bearing on this. The music brought back very hazy memories of feeling young and energetic, but also of feeling fundamentally lost, alone and unhappy in a world that made little sense to me.

I think the music had brought back how I was really feeling at that time in my life – a feeling that I kept very well hidden, for fear of, well, I’m not sure what. My peers all seemed to be happy and relaxed with life. They were all starting to look for independence, and were achieving it by going to colleges on the other side of town by bus and by applying for university or planning to go travelling around the world. I too was doing this, but primarily because that’s what everyone else was doing, and I was filled with with a feeling of barely controllable terror much of the time.

I’ve been quite teary on a number of occasions over the last few days. Perhaps this is because I’ve had a bit of alone time in the evenings for a change that have allowed me the luxury of thinking about things in detail. This is a natural conclusion to the anxious and down feelings that I’ve experienced over the last week or two, and I feel lucky to have had the opportunity to try and express and deal with it, finally.

Going back to Freddie’s lyrics, I can’t help but notice just how well they sit with my own view of the world these days. I’m sure they didn’t back when I was a teenager.

It seems to me that there is hard-core logic in the words. Their truth is self evident, yet so wonderfully understated, allowing you to fill out the detail yourself using your own thoughts and experiences of the world. This too may go some way to explaining why the song makes me cry.

The world didn’t make much sense to me at seventeen, and it still doesn’t today at thirty-six.

This song, however is as relevant now as it was twenty-five years ago. Brilliantly simple, yet powerfully touching and perfectly executed.

What more could you want from music?

Long days and food

A little under two weeks ago, I was on holiday with my family in Edinburgh, Scotland. It was the end of the afternoon, on what had been a long day. We’d spent some time at the Museum of Childhood, seeing children’s toys down the ages. We’d also seen some street performers taking part in the famous Festival Fringe – including a couple of chaps who juggled firey clubs between themselves whilst one of them was balancing on a ladder and the other balancing on a six foot unicycle. As an armchair juggler, I can tell you it was impressive stuff.

After lunch we’d caught a bus that took as to the Ocean Terminal to see the Royal Yacht Britannia – the former sailing vessel of the British Royal Family.

By late afternoon we were still at the Ocean Terminal, the kids were hungry, and we were on the other side of town from my mother in law’s, where we were staying. We decided to buy the kids their dinner in a restaurant, and that we’d eat later, after the kids were in bed.

My brain was screaming at me – “eat something!”.

I didn’t though – my wife and mother in law were adamant that they weren’t eating at the restaurant, and so my instincts told me that it was best to follow the status quo, rather than potentially appear to be rude.

After we fed the kids, we caught the bus back towards Princes Street, in the vicinity of which we hoped to get a second bus back to the house.

Edinburgh’s roads are all being dug up at the moment in preparation for a new tram system that will be up and running in a couple of years time. We battled the traffic until we were about half way up Leith Walk. Then the bus stopped in road works, and well, didn’t move at all for the next ten minutes. When it then did move, it moved about half a car length each time, often several minutes apart. I felt exhausted and my brain was telling me that I should eat, and that I was a fool for not having eaten with the kids. By now, about half the passengers on the bus had got off and started walking the half mile or so back towards the centre.

I suddenly felt we had to do this too, and in a grumpy and clearly stressed manner told my wife. So we walked. The bus overtook us about half way. Bah.

It took us well over 90 minutes to make the five mile journey back from the Ocean Terminal to my mother in law’s house.

When we got back I collapsed in a chair. I felt dazed and exhausted, and my brain was screaming at me. “You’ve only eaten about 900 calories today! What are you playing at?”. It was at about this time that my wife started talking about dinner again. She wasn’t feeling very hungry. She and my mother in law would have a bit of a salad once the kids were in bed. Would that do me?

NO! It jolly well wouldn’t! I need proper food! I should have eaten at the restaurant!

Now – I don’t know if you are seeing a pattern here yet. My symptoms were all of sensory over-stimulation. It had been a very busy and long day and we had seen and done a lot. My senses had taken in more than they can manage for one day. But my brain was telling me something rather different. It was telling me that the problem was that I needed to eat.

Why might it do this? Well, I think it’s a learnt behaviour that is wide of the mark. I have of course experienced these sensations of feeling dazed and exhausted following busy days my whole life. Long before I learned about Asperger’s, I had to put some sort of a label on why I ended up like that, and what the cause was. I decided that the problem was that I hadn’t eaten or drunk enough over the day, and that my blood sugars were low. From my reading of Wikipedia, I can see that this sort of extrapolation is pretty common in people who think they know what low blood sugars means. At the time I acquired the label, and until very recently, it felt like this scenario fitted very well. After all, the exhaustion would come towards the end of the day, and if I stopped, sat down and ate, then after an hour or so I would feel much better again. It makes sense, doesn’t it?

So, on that day, as on many others, my brain was telling what I thought I knew – that I hadn’t eaten or drunk enough, and now my body was crashing because of it.

Wrong wrong wrong.

The real reason for my feeling dazed and exhausted was simply the AS-related sensory overload that I was experiencing after a full-on day.

It’s interesting to note that despite the way I was feeling, I could have walked miles effortlessly if I had needed to. As it was, we briskly walked a good half a mile up hill to try and outrun the bus, without it feeling a strain.

Of course I feel better after I’ve sat down for a while and eaten some food and drank some water. But it isn’t the food and water that are having the magic effect – it’s the proper rest. I wrote recently how on another family holiday I started to sense how I was over stimulated at the end of each day, and how time was the healer – an hour or ninety minutes restored me. Well, this is the same thing.

The problem is that I’ve been wrongly viewing my feelings of exhaustion as a signal to eat for many years, and in that time I’ve put on quite a lot of weight.

And do you know the real big give away that should have told me long ago that the problem wasn’t hunger? I frequently don’t feel hungry even when my brain is telling me that I need to stop and eat. How can I possibly have missed that?

This week I’ve started trying to pay more attention to what I’m eating. I’m trying to trust my own judgement about when I’m actually hungry, and not just to stuff my face when I feel overloaded. It’s difficult, but on a couple of of days worth of evidence, it’s working so far.

Whether it will continue to work remains to be seen.

Where is everyone?

I don’t know if you’ve noticed – I certainly have – most of those who contribute to the debate here are female. More than that, almost all of the blogs that I read regarding ASDs are written by women. This isn’t me being selective, indeed I’d dearly love to hear more about AS from a male point of view.

There are a few notable exceptions - Gavin’s blog springs immediately to mind, but I don’t think I’m overstating things to say that most ASD bloggers are female.

There is of course absolutely nothing wrong with this, but I do find it odd. After all, one of those universal ‘facts’ that goes round and round is that four times as many males have ASDs as females. This may of course not be entirely reliable, but even if the real figure is a 50/50 split, you can’t escape the fact that there are precious few male ASD bloggers.

If you have trouble expressing your feelings and emotions verbally with others, as a great many of us with ASDs, both male and female find, then writing can be a wonderfully liberating release. The Internet provides a freely available, easy to use medium for people like me to express themselves in writing, and what’s more, if you persist at it, people will give you their own thoughts back. This is great – so where is everyone? And just where are all the male ASD bloggers?

If I looked hard I’d probably find a few hundred ASD blogs out there. If I tried really hard, spent a long time on search engines, and looked at forum sites like wrongplanet.net maybe I’d be able to push the number of people with ASDs who regularly write about it to a few thousand, but I doubt I’d get the figure much higher than this.

That really isn’t many, and is a tiny fraction of those who have been diagnosed.

Why?

This really makes no sense to me. Am I missing something? Anyone got any ideas?

Oh, and if you can find me the missing male ASD bloggers, I’d be very grateful!

Frazzled

I’m finding that I’m needed to write each morning when I get into work this week. If I don’t attempt to empty my brain a bit, I can’t settle down to the work that I’m being paid to do.

So it’s Wednesday morning, and here I am writing once more. What’s on my mind today?

Well, I’m feeling agitated and stressed for a number of reasons. As usual with these things, a number of small issues trip me up in a short period of time and leave me feeling far more stressed and anxious than the sum of their parts should do.

A big one is to do with the hard work I’ve been putting in to starting up my own business. As I suspect many people in my position find, there is far more work involved in the set up of a new venture than you imagine there to be. I spent five and a half hours yesterday working on getting the last chunk of my managed email offering working in a way that I could sell to people, and felt a great deal of satisfaction when it all started to come together and work. But someone else was rather less satisfied – my wife. My working on it meant that I didn’t spend any quality time with her last night, and she wasn’t impressed. Indeed she questioned why I needed to spend so much time working on this at all.

In a way, she has a point. I manage her email already, and it works. Why then do I need to spend many hours working on something that as far as she can see already works?

Well, the problem is that her email works in a way that I couldn’t possibly sell to other people. It isn’t fault tolerant, and it wouldn’t scale. I don’t want to start selling the current configuration only to have to go back to those I’ve signed up in a month or two’s time and tell them either that I’ve lost all their email because my machine broke and I don’t have backups, or that I now have to inconvenience them to change their configuration because I’ve finished implementing the new system. I have a customer waiting for the email service, so don’t feel that I can hang around.

My wife has in general been very supportive of my decision to set up my own business, but last night wasn’t. My protestations that I was doing this in order that I could ultimately help support my family was met with derision. My wife said that I was just tinkering for tinkering’s sake.

This comment cut deep. In much the same way as I mentioned in a post a couple of days ago, I was being told something counter to my understanding by someone that I trust and respect. I immediately felt that she was right. Who was I kidding? Setting up a business? Am I ever really going to be able to do that? Well am I?

More than just having a customer waiting, it’s true that I feel a compulsion to get this new email service up and running – like I have to prove something to myself. I need to know that I can do this – that I have a talent for something. I also need to see that I can finish things that I start. Perhaps it’s true to say that this business venture has become something of a special interest that I feel that I need to spend time on.

Has my wife just been humouring me all this time, or were her comments last night simply because she was angry that I wasn’t spending quality time with her last night? Only she can answer that of course.

There are other little things knawing at me too right now. My son missed his swimming lesson this week because my wife forgot to take him last night, and now he’s missed his place on the next course as it has now filled up in his absence. My wife said I should have reminded her about it yesterday. I now feel like I’ve let my son (and wife) down.

The chain keeps coming off my son’s bike, and he wanted to take it to the Holiday Club he’s at today. My wife told me that the chain was off when I got home last night, but I was too embroiled in my work efforts to remember fix it. I tried to hurriedly fix it this morning, but failed – either the chain ended up too loose, or the wheel ended up going on at an angle meaning the brakes rubbed the whole time. In the end he took his scooter to the club instead of his bike. Frustrating, and once again I feel like I’m letting my son and wife down.

On top of all of this I’m finding it difficult to get down to the work I’m being paid to do.

All of this just goes round and round in my head and doesn’t help. I don’t feel like I’ve been on holiday, I just feel more stressed and anxious than I did before I went on holiday.

Gah!

Still, I’ve got some of it on paper now, and I’m finally not feeling as sensorily wiped out as I have been doing since my long drive home from holiday on Saturday. Hopefully I can now knuckle down and do a bit of what I’m being paid to do.

I hope so – if I don’t knuckle down soon, people will start to notice the lack of output from me, and the potential consequences of that don’t bear thinking about.

I must remember to write

I’ve almost certainly said something like this before, but with my memory processes being what they are, I can’t remember if I have or not.

Yesterday was about writing for me. I wrote the last two articles for the blog – some 1700 or so words. I wrote a bunch of replies to comments, and some in-depth technical emails for work too. All in all, I spent most of the day putting my thoughts into writing.

And you know what? I felt absolutely great for having done so. I’d forgotten just how soothing I find writing.

When I got home, I felt my usual AS-over-stimulation-related tiredness from the working day, but it didn’t last anywhere near as long as it has been doing in these recent post-holiday days. I enjoyed a relaxed but not overly tired evening, and even managed a quick ten minutes of work towards my own business without putting it off or looking upon it with dread, which again is a first for this week.

So, my tip to myself, which I will of course instantly forget, and will probably not rediscover from this post at any point in the future – is to write whenever I can. Only writing truely clears out my thought processes, allowing me to feel relaxed, less stressed and thoroughly less over-stimulated.

I’m on holiday again next week with my family, this time in Scotland. I’m going to take my laptop with me, and will try to write a couple of articles whilst I’m there. It will be interesting to see how my exhaustion levels compare at the end of the week versus how they were at the end of last weeks holiday.