Fallout

I’m continuing to experience fallout from my stressful evening at the theatre last weekend.

The flashbacks and replays of the events have stopped, thank goodness, but the evening has served to heighten my background levels of stress and anxiety considerably, and these have yet to abate.

Whilst not causing a downward spiral by any means, the increase in anxiety has had a very noticeable affect on my ability to function in every day life. Since Saturday night there have been many examples of this – here are a few:

On Sunday, I was a bag of nerves, and had a very short temper. In the early evening my daughter pestered to play a game. I felt over stimulated, and disinterested. We all played as a family, but luck wasn’t on my side. I helped my three year old daughter with the game, and she ended up doing twice as well as I did. Finishing last was just the way things turned out and had little to do with skill, but it made me feel lousy and even more grumpy.

On Monday, I got very little done at work. I wrote my previous article here to try and clear my brain out, but my stress and anxiety were terrible regardless. I found it very difficult to concentrate on what I needed to do, and spent much of the time just browsing the Internet. I simply didn’t feel capable of working.

My daughter has a cold. She was coughing in the night last night and up several times. My wife got up to deal with her first, but I got the nudge in the ribs the second time. Instead of being gentle and sympathetic, I was enraged. I stomped about, and in no uncertain words told my three year old daughter that it was the middle of the night, and that we should all be asleep. “I’ve got a runny nose”, she answered unhelpfully. I stomped around until I found a box of tissues, and then grumpily wiped her nose and almost menacingly told her to go back to sleep. Not a great example of good parenting.

It got worse this morning, when my wife pronounced that our daughter wouldn’t be in nursery today, because of her cold. Our daughter is only in nursery part time, and this gives my wife two days during the week where she can make appointments and get things done. “You’ll have to work from home”, my wife told me ten minutes before I was due to leave for work, “because I have an appointment I can’t cancel this morning”. Nooooooo! This sort of derailment to my schedule sits very badly with me. Not only do I want to ignore the change in plan and push on with what I was supposed to be doing, but in situations like this, I always feel guilt – like I’m letting work down by not being able to make it into the office. Add in the fact that since Christmas I’ve spent a lot of time working from home due to poor weather conditions, and my increased background anxiety too, and it meant that the prospect of working from home felt truly awful. What would I say to my boss? I worked from home two days last week due to ice on the roads (everyone else made it in), and I left an hour early last Friday because my wife was ill. I really did not want to face the prospect of explaining this one.

The crazy thing is that I know my boss will be fine with it, and I know that my many recent days absent from the office have been due to the weather which is out of my hands. I even said this to my wife, as I sat with a sulky face trying to persuade myself that working form home would be fine. She didn’t look impressed.

What happened next just made everything worse. My wife’s decision not to send our daughter to nursery was made whilst my daughter was still asleep. She woke up just before it was time for my son to go to school. She was fine! Change of plan again. I stayed at home with my daughter whilst my wife took our son to school, and then I left for work. And herein lies the next source of stress. I leave early for work – arriving around 8am usually, so that I can get a parking space. I know from experience that if I arrive after 9am, I am unlikely to get a space. This then means struggling to find a space somewhere else that doesn’t cost me £7.50 for the day. This in another of those situations that makes me anxious at the best of times. I took a deep breath and resigned myself to pay the huge fee for the car park that always has spaces. At least I had coins in the car with which to pay.

As it turns out, even at 9.30am, I managed to find a space in my usual car park today. Well, it’s not really a proper space, but spaces aren’t marked in this car park, and as long as you don’t block anyone in, it’s fair game.

So here I am at work once more, and still struggling to get going. I know that eventually my stress and anxiety levels will go down, but I have no idea really how to help that along or even how long it might take to feel better. You see, this sort of background stress is pretty common with me, but I’ve never really paid attention to it in the past – I’ve just assumed it is normal, and there is nothing I can do about it.

Do you have any suggestions for things I can try to help reduce my background anxiety levels?

Confirmation

Wow.

Not only have I not written anything here for the last few months, I’ve not be reading any of your blogs either. For the first time in well over a year, AS has not been a conscious part of my daily routine for some time.

Today I’ve not only written here for the first time since November, but I’ve also spent a bit of time reading some of my favourite AS blogs. Wow really does sum it up for me.

I spent most of last year experiencing a strong sense of kinship with many of you who write about your experience of AS. Coming back to your writing after a break has felt quite profound.

I really am one of you.

The way you see the world is the same as the way I see it. The complexities you find in your social relationships are just like mine. Your confusion, surprise, shock, and routine are all mine too. Above all, there is that certain quality in the writing, something that I can never quite put my finger on that really screams at me that we are alike.

That’s not something I get anywhere else. Not from my family, nor from work colleagues or from any of my few friends who don’t have AS. And perhaps because of that, it feels amazing.

Thank you. All of you.

One, two, three, four…

You know how it goes:

Ring-Ring. One…

You don’t like calling people on the phone, and have just spent ages trying to pre-play the conversation in your head.

Ring-Ring. Two…

Anxiety is sloshing around.

Ring-Ring. Three…

It’s ok, people rarely pick up on three rings, unless they are sitting by the phone.

Ring-Ring. Four…

Ok, I admit it. I count the rings before people pick up the phone.

Ring-Ring. Five…

It’s partly to do with knowing when to put the phone down when the phone isn’t being answered.

Ring-Ring. Six…

It’s also to do with my love of patterns. I find myself counting involuntarily these days.

Ring-Ring. Seven…

Come on – where are they?

Ring-Ring. Eight…

Hmmm… Maybe they aren’t there. But eight rings isn’t all that long. (It’s actually around 24 seconds…)

Ring-Ring. Nine…

I can visualise them running towards the phone now.

Ring-Ring. Ten…

Pick it up! Oh no. They didn’t. Maybe they weren’t running after all…

Ring-Ring. Eleven…

Maybe this time! Oh – no.

Ring-Ring. Twelve.

Handset  down.

I don’t know why I picked twelve rings to be the cut off point if I’m honest. If I really think about it, most people have picked up by half a dozen rings if they are there. But twelve it is, most of the time. If I’m phoning a utility or some other sort of service I’ll hold on for longer. But with people, I count to twelve and then put the handset down.

Do any of you have a hidden and slightly odd use of patterns like this one? I’d love to hear about it!

Peter Pan’s new coat

Ah yes – Peter Pan, the boy that never grew up. I was left feeling like Peter yesterday.

It all started when we rushed out the door on Sunday morning. I took the kids to the rugby ground – my son for his weekly training session, and my daughter to stand and watch with me, whilst my wife went to the supermarket just down the road from the rugby club to get the weekly food shop done. I say supermarket, but it’s actually two right next to each other – Aldi, the lovely and decidedly quirky German import, and Asda, the local giant which is now owned by America’s Walmart. Asda’s name, incidentally, comes from a contraction of Associated Dairies.  I mention this because it is one of those odd little bits of information that frequently pops into my head when Asda is mentioned – there is clearly an association there in my brain, and my AS helps to push me into mentioning it. Only after I’ve told this to people will I start to feel embarrassed for having done so.

Anyway – Asda isn’t the star here, it’s Aldi. Aldi is great – it doesn’t stock the huge range of Asda, and it isn’t big on well known brands, but the things it stocks are usually of excellent quality, and many – such as cold continental meats – are better and also much cheaper than at their giant next door neighbour. Aldi also have a clever trick of having some non-food specials in twice a week at unbeatable prices. Everything from power tools to computers, light bulbs to bathroom furniture. At the start of the summer we bought a giant four berth tent and lots of camping equipment from them when they opened one Tuesday morning (just in case they would sell out before we got there), at prices far better than any of our local outdoors shops could manage. We like Aldi. Anyway…

Whilst I supervised the kids at the rugby, my wife went to Aldi first, and then across to Asda for the few items she couldn’t get at Aldi. We met up at the end of the training, and she told me that she’d seen some winter coats at Aldi – both for my son and me. We wandered down the road to take a look. My son liked his jacket, and I thought the one my wife had found for me was great. They were silly money too, so we bought them. For £18.99 I got a waterproof coat with an unzippable fleece lining. It’s nicely finished, is deliciously warm, and has plenty of pockets. My son’s is like a slightly brighter scaled down version of mine. The fleece lining doesn’t unzip on his, but hey – for £7.99 you really can’t complain – and it is still waterproof.

At home, after lunch, I found myself doing something that I remember doing when I was a child.

I took my new coat, and spent a good ten minutes pouring over it in great detail. I unzipped each of the pockets in turn, and explored them with my hands, seeing what size they were, and wondering where to put each of the things that I carry around with me. I marvelled at the stitching, and carefully cut off the couple of stray thread ends. I examined how the fleece was zipped in, amazed at the trickery used to hide the metal zip ends behind folds in the softer material where it might make contact with my neck.  I tried it on and then took it off again, and then put it back on and did up the zip right to the top. I unfolded the hood from it’s hidden compartment, and then carefully folded it back up. I felt the fabric of the fleece lining and of the outside too. I listened to the sound that my hand made on the outer fabric.

This is something I can always remember doing with clothes, but especially with coats. Coats tend to be quite complicated garments with lots of pockets, so there is much to explore. I can still remember a summer coat (this is the UK after all) that I got when I was about ten. It was green and blue and yellow – very garish in today’s terms, but quite fashionable back in the mid eighties. It had a pouch on the front for your hands, much like a hoody sweat top, but you had to peel the pouch off (it fastened on at the top and one side with velcro) to zip and unzip the jacket – really very unusual. I loved it for it’s unusualness, and for the lovely way it had been stitched together. To me, it was a coat to be proud of. I guess I feel much the same way about my new coat. It is a no-name brand, and in all likelihood the material probably isn’t wonderful quality, and maybe it’ll lose it’s waterproofness quickly. But it is well engineered in a very German way, and well finished, and it was an astonishing bargain to boot.

I keep wanting to put it on – in fact each time I’ve popped out of the office this morning, I’ve put it on. This is unusual – I usually brave the trip to the coffee shop or the post office in just my shirt sleeves, even at this time of the year.

So, I feel like Peter Pan, the boy that never grew up. I feel ten years old again, pouring pride and affection into my new coat. I can’t help it – it’s just me.

Yet whilst my actions may be very much like they were when I was child, I’m concious of the fact that they are not the actions of many, probably most kids. My son is only five, so I can’t compare directly with myself at ten, but his reaction to his new coat was, I think, fairly typical of boys in particular. He liked the colours, pronounced it as  cool and said he’d wear it. When we got home, it got discarded on the kitchen floor and forgotten about until this morning when it was time to leave for school.

Will he react that way at ten? I can’t say, but I suspect he’s more likely to continue to react that way than to have my fascination with the mechanics and design of it.

In lots of ways I’m like Peter Pan – many of the things I do now are the same as when I was a child. However, the child in me is still really rather different from your typical child, so the comparison feels strained to me. I’ve read many times over the last year about immaturity and naiveness in adults with Asperger’s, and associated behaviour being described as child-like. But it occurs to me that I’ve not seen it pointed out that the behaviour is child-like in a peculiarly ASD way – but it most certainly is. And remember how kids with ASDs get described? That’s right – as little professors.

So maybe I’m not like Peter Pan at all. Maybe I’m actually like a little professor, in an adults body, with a strange fascination for winter coats.

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.

–

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?