It came like a bolt from the blue.

It always does.

My wife wanted to talk. Not a friendly talk, but one of those talks where she wants to vent her huge frustration with me. She’s very good at this, and whether she realises it or not, has a canny knack of vicious character assassination, in these often one sided arguments that run from when the kids go to bed to when we go to bed.

Argument is not one of my strong points. I’m not often quick thinking, and so argument directed at me is typically just absorbed, and I remain quiet much of the time, unable to think of a decent counter to use. This, of course makes things worse. It makes it look like I don’t care. Of course I care. I just can’t produce the necessary come back that my wife expects and wants.

Our argument last night left me not only feeling down and unloved, but also completely misunderstood, and a little suicidal.

I didn’t see it coming. I rarely do. This perplexes my wife, who thinks she is being very obviously ‘off’ with me for days before hand. But I don’t usually see it, and I didn’t see over the last few days.

My life since my diagnosis has thus far seemed pretty good. I’ve felt like I’ve been achieving things – like I’ve moved on a bit. Except, as I discovered in a flash of inspiration that I had independently of last night’s argument, I haven’t actually been moving forward and achieving things.

What’s been happening is this: My focus has moved in a series of very fixed directions. For focus here, you can read special interest if you prefer. As usual with special interests, I feel to have no control over the direction the special interest takes. I’ll go further than this, and make another point, that I think is especially important here – for the most part, I’ve not even been aware that what I have been doing is indulging a special interest. Seriously.

For the last three or four weeks, I’ve felt like I’m making great progress at work. A series of disjoint jobs that have needed tackling for months have started to pull together into a larger project that is finally sorting out a whole chunk of loose ends. I’ve said as much to colleagues, telling my boss and my wife just a few days ago how satisfying I was finding it that everything seems to be pulling together and things seem to be getting sorted out.

As I mentioned above, my general thoughts on this have simply been that I’ve moved forward, and managed to get on with things and be productive. But that is an illusion.

In reality, it is special interest all the way. And after eight solid hours of complete focus at work each day for several weeks, the cracks have started to show this week. I’ve grown progressively more tired over time, and in recent days I’ve become snappy at home, especially with the kids, and I’ve not been sleeping well. My intense focus at work each day has left me drained outside of work hours, quite lacking in thought and speech, and I’ve clearly been uncommunicative at home – not that I’ve actually noticed this.

Yesterday, I broke. After struggling to get started at work, I found that I was obsessively hunting out cool applications and rearranging the home screen on my phone. I spent three hours on it, when I should have been working. The difference with this was I could see it was obsessive special interest. I couldn’t stop, much to my own horror. Even when I was hungry, it took me a whole hour to drag myself away and go and get some lunch.

So I was feeling quite depressed even before I left for home yesterday. For the first time I could see that I wasn’t a new more productive me, work had simply become my special interest, to the exclusion of everything else.

And then came the argument, which of course I didn’t see coming either.

It was extremely upsetting for me, because of course I was painted in a very bad light by my wife. I understand that this is what people do in arguments – you air your frustrations, and the other person in the argument airs theirs, and so the air ultimately clears, as both people get their grievances off their chest.

But of course, that dynamic doesn’t really work when I’m one of the people in an argument. I soak up the criticism, and don’t offer very much back. I feel more and more awful and useless and poorly understood, and reply less and less. This just makes the other person in the argument even more angry and the cycle goes round and round until bedtime, at which point the other person is often apoplectic with rage, and I’m a gibbering wreck.

So it was last night. I felt wretched, and useless, and that no-one understood me at all, despite my genuine best efforts to explain things from my point of view. The last part of this is perhaps the worst. We all feel useless from time to time and remorse too. But the feeling that the person closest to me really didn’t understand me or how I am, was almost indescribably painful. I felt completely alone, and that I would never truly find any understanding from anyone else.  I could see my life going forward being a series of unintended disasters where I unintentionally piss other people off. With those thoughts, and jibes from my wife suggesting our relationship was in trouble, and questioning whether I was capable of being a father in a family, it’s perhaps not surprising that I started to wonder where life was actually worth living.

I’m feeling a little better this morning – perhaps surprisingly, I slept well.

But I still feel wretched and useless. What’s more I hate myself too. Today is one of those mornings where I wish I didn’t have Asperger’s. I want to be normal. I want to feel like I’m understood for who I am. I want to have arguments with people and I want to be able to organise my life in a way that I get on with other people rather than piss them off. I’ve had enough of faux pas, and of hating social activities. I don’t want to be ultra-focussed on one activity at a time, and I’d like to be able to express emotions without difficulty.

And the daft thing is that my wife suggested last night that I can do all of this, because of a single sentence from the Diagnostic Assessment Report. She said I wasn’t trying. But I do. I try hard every day to fit in and do my best. Perhaps my best just isn’t good enough.

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Out of the blue

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Where do I start?

Two weeks ago I was diagnosed with Asperger’s Syndrome. That didn’t come as a surprise – I have after all been talking on this website for nearly eighteen months now in a matter-of-fact way as though it was already a done deal. The diagnosis left me feeling both shocked and relieved. Yes, shock. It’s all very well researching and then convincing yourself that the balance of evidence says you have Asperger’s, but its a very different thing to be told it by someone who is qualified to do so. There is now no room for doubt. I was right, and I no longer need to worry that terrible what if: What if I am wrong?

Wednesday 12th May 2010 wasn’t a life changing day for me – the life changing day was the now forgotten date back in autumn 2008 when my wife sowed the seed in my mind that I might have Asperger’s. May the 12th was however perhaps the start of a new chapter in my life. Diagnosis may mean I can move forward with confidence in my life. Diagnosis may mean that I can negotiate a better way of working. Diagnosis may mean that I can get some help in making my marriage and other relationships work a little more smoothly. Diagnosis may bring me some peace of mind. Maybe.

But all that is for the future. Right now, I still feel a little in limbo. Whilst I was told at the end of the assessment that I have Asperger’s, the report has yet to land on my door mat. And without that a little part of me still hasn’t accepted things, and I haven’t felt able to ask myself what next.

But I can’t put off writing any longer. My pressure cooker of internalised thoughts and feelings is likely to explode soon if I dont let some of it out. My anxiety is back too, and is not giving me an easy ride.

So. What happened on D day?

For a start, I took the day off work, despite my assessment not starting until 17:30. My thinking here was that if I went to work, then I’d either arrive at the assessment overly stimulated from work, or I’d just sit at my desk all day getting nothing done other than getting more and more anxious. My parents had been drafted in to collect the kids later in the day, and to put them to bed for us. Both knew about the appointment, but didn’t seem to want to mention it. I think the nearest we got was when discussing food for the evening. Might me and my wife want to go out for a meal when we get back? I doubted it, but suggested a takeaway. My mum commented that I might feel quite down when I got back, so perhaps takeway was the better option. Hmmmm. After a little reflection, this meant only one thing to me. That she though I was going to come back having been told I didn’t have AS. Oh well. I decided that I really needed to put that out of my mind.

So, instead of work, my wife and I went shopping for the day. There is of course a risk in this too – the large shopping centre we went to could easily sensorily overwhelm me just as much as work. We were lucky – with it being a week day, it was reasonably quiet, and we took our time, not rushing or feeling under any pressure to be anywhere.

As the afternoon progressed, I started to get more nervous, and less able to potter around the shops. The final half hour before we had to leave for the assessment went on forever. When we did leave, I drove. This again was a calculated move on my part – by driving, I had to concentrate on the roads and the other cars, leaving little brain capacity for nerves and anxiety. It worked, for the most part, but as we pulled up and parked in the church car park next door to the building where the assessment was taking place, the anxiety once more had room to express itself. I felt terrible.

The twenty minute wait for the assessment to start went on forever, and during this time, I found myself shaking and unable to focus on anything at all.

In complete contract, the next ninety minutes or so passed in a rushed blur. After an initial five minutes or so where I found it difficult to come up with the right words, I managed to relax, and Special Interest Number One of the last eighteen months or so was able to take the floor and ensure that I got my point of view across.

Ninety minutes. It’s not long to impart enough information to base a diagnosis on. Whilst various subjects were covered in enough detail, I ultimately left feeling that others weren’t covered, and in some ways that left me feeling cheated.

After the assessment, my wife was ushered in and asked a few questions, but the Prof had already made it clear that he’d reached a conclusion about my diagnosis.

And that diagnosis: Well, I have Asperger’s Syndrome. I sank into my chair when the Professor finally said it. Those words felt like they had weight. My feeling of relief was huge.

And then some more detail: I have particularly difficult issues with social interaction and theory of mind – I don’t read many nonverbal cues, and as I don’t have a good theory of mind about myself, I find it difficult to put myself in other people’s shoes. In addition, I clearly have many day-to-day problems caused by Dysexecutive Syndrome – or executive dysfunction as I’ve referred to it throughout this blog. The Professor likened my problems in this area to ADHD, although stressed that he didn’t think I had ADHD itself.
There are also some areas where I have less of a problem. I used a great deal of expression during the assessment, and was able to convey my point of view well. The professor also noted that I was very well aware of my own limitations, and had clearly made adjustments throughout my life to try and cope and work around them – long before I suspected I had AS.  These were all things, he said, that he didn’t see all that often in people with Asperger’s. The professor used an interesting phrase to describe this. He suggested that my Asperger’s was in some ways mild. He then went on to clarify this by saying that in many ways this made the life of the affected person more complicated and difficult, as they were far more aware that they were different, and they often saw the consequences of their differences and had to deal with that.

I understand where the Professor is coming from on this, but I was, and still am somewhat uncomfortable about his choice of language. I don’t like the use of the word mild, because I feel it conveys the wrong message. Not to me, as such, but to other people who don’t understand the condition well. I can understand and accept that I have difficult problems in some areas, and far less of a problem in other areas that encompass the AS definition. But try telling someone that you have Mild Asperger’s. It clouds the waters, and almost certainly makes the situation more confused – if its only mild then clearly it isn’t much of a problem, is it?

So there you go.

When we got home, my mother was keen to know the outcome. She eventually asked after haf an hour or so, and I told her very simply – I have Asperger’s. Clearly, the right response was difficult to find. She said that it had been obvious from my mood – I was elated, and that actually the important thing was that I made the most of things. Ummmm…. Thanks mum.

–

So, where next?

I’m not sure as yet. I’m hopeful that the arrival of the written report will act as a catalyst for moving things forward. Both my wife and I are likely to visit the Professor again for an hour of talking about what happens next. I think we both need to hear about the pros and cons of being more open to others about my diagnosis. My AS has clearly impacted on my work life in unexpected ways over the years, more often than not getting me into trouble or causing unnecessary friction. We also need to hear about what might help both of us going forward.

Would being open about my AS make things better or worse? Do you have any strategies that might make life more straight forward?

As always, I’d love to hear your thoughts.

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Diagnosed: Part 2

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I’m sure that everyone finds it difficult to be positive all of the time, no matter how high their self confidence is.

My self confidence level moves around hugely, but on average has never been very high. Trying to keep my glass half full rather than half empty is a problem that I face frequently, and even after all these years, I still don’t have any hard and fast remedies to turn things towards the positive.

Learning about my Asperger’s appears to have just added to the volatility of my mood and in turn my self confidence. Whilst I spend much of my time these days feeling that I now know and understand myself far better than I did a couple of years ago – which is a very positive thing – I also frequently see differences in the way I am versus ‘normal’ humanity that I simply wouldn’t have spotted before. I find seeing these differences an almost invariably negative thing, and their discovery typically pushes down any positivity that I was feeling. My differences hit me like a punch in the face – they are unexpected and often unpleasant.

And then there is the self doubt to contend with too. Having grown up in a world that frequently moves and works in ways that I fail to predict and fully comprehend, I’ve grown accustomed to being ‘wrong’ about things. That nagging self doubt creeps into all areas of my life, especially when I’m not feeling positive. On darker days I still question whether I actually am on the autism spectrum. Despite all my reading up and thinking on the subject, the countless hours of research and self evaluation, I still can’t convince myself sometimes that this label applies to me. Why? Well, I’ve been wrong in the past when I was sure about things. Why not now too?

With my diagnosis rapidly approaching, I’ll soon have the opinion of someone who knows. I hope that will settle the internal arguments I have about it. My natural reaction right now though is to say that I dont know what the outcome will be.

Am I nervous about the diagnosis? Of course. I’m also haunted by the words of my mother, as spoken to my wife. To paraphrase: “If he does come back with an Asperger’s diagnosis, it’ll be because he’s read up on the subject so thoroughly that he knows all the right things to say”. I can see through this, of course, but I can’t pretend that it doesn’t hurt, and on less positive days, my lack of self confidence says that maybe she could be right.

Writing seems to help, to a degree, as it means I can externalise some of the thoughts that are running through my head. So as we near ‘D’ day, expect me to write here more frequently again, because seeing my glass as half full rather than half empty  is important.

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Glass half full

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I have always been astonishingly good at faux pas. Since my self-realisation eighteen months or so ago that I have Asperger’s, there has of course been a reasonable explanation for this.

Whilst I prefer to hide in the background, I do often say or do things are are simply not subtle. I say things that upon reflection it becomes obvious that I shouldn’t have said. I do things that I really shouldn’t do. Things that make others cringe with embarrassment at.

But here’s the thing. The ways in which the autism spectrum makes itself visible in peoples’ lives is for the most part very subtle. Both my wife and I recently reached the same conclusion on this, and we’ve since discussed it at length. Our thoughts on this have of course been formed from our own experiences, and from observation of my family, and as such centre around the effects of Asperger’s Syndrome rather than on the Kanner’s end of the spectrum.

It’s nearly a year ago now that I first emailed my parents to try and explain that I had Asperger’s to them. If you’ve read much of this blog, then you’ll know that the fallout from this event was rather large, and more difficult to deal with than I was expecting. Well, it is still causing a problem in my family, and I’m still finding it difficult to communicate with my parents, and in particular with my mum. The big bone of contention is purely that my mother cannot see my autism. Her line a year ago – and still to this day – is that I don’t have Asperger’s. She has gone as far as saying this to my wife, but not directly to me.

Next month, I am going to attend an appointment to get my formal diagnosis. As part of this, the clinic have sent an in depth questionnaire aimed at the parents of attendees to try and help get a feel of what the attendee was like as a child. On a recent visit by my parents, I took a deep breath, and managed to raise the subject of the questionnaire. Would they mind filling it in when they got home? My mother jumped at the chance, which was something of a relief, yet what happened next has been ringing alarm bells for me ever since.

I handed them the questionnaire over breakfast on the last morning of their visit. I then left for work. What happened next is relayed by my wife. My mother spend some time pouring over the questionnaire without actually filling it in. She told my wife that I “exhibited hardly any” of the symptoms as a child that the questionnaire was trying to draw out. My dad then started looking at the questionnaire with my mum, and murmured his agreement too.

And that is the last we have seen or heard of the questionnaire. I naively assumed that they’d fill it in and send it back to me. They didn’t. After a couple of weeks, it dawned on me that I wasn’t going to see it. I checked the copy that we had from the pack the clinic had sent. There, in the footer of each sheet was the clinic’s address. My parents have sent the questionnaire straight back to the clinic. It is difficult to draw any conclusion from this other than they don’t want me to know what they have answered. This does nothing to help soothe family relations.

The problem, with my parents, I am now sure, is one of subtlety.

When I was growing up, my parents were not looking for signs of the autism spectrum. Indeed the whole concept of an autism spectrum did not exist at that time. Autism was a single condition that caused a small number of people to be completely lost in their own world all the time. Based on that definition, I certainly don’t have autism.

Yet the clues were all there, albeit subtly, whilst I was growing up that I was on the autism spectrum, had the definition existed in its current form. I’ve talked about all of this at length before, but briefly: I was bright at school, and did well in academic subjects, but I was hopeless at sports. The rigid structure of school life suited me very well. I was told what to do, and I did it without question. Indeed the routine ultimately provided me with a great deal of comfort – so much so that I can still conjure up the feeling to this day. At the same time I almost completely failed to make or keep friends. The start of a new school year always provided me with huge stress and anxiety. Classes had new people in them, and took place in different orders in different rooms than before, with different teachers. My peers started becoming wonderfully social creatures, and I really didn’t understand what they were up to. It became more and more difficult for me to blend into the background as I understood less and less about what my peers were up to. I became depressed and full of anxiety.

My parents weren’t looking for any of this. They didn’t see me during the day at school. I’m certain they put my lack of friends down to a combination of shyness and the fact that I was sent to a secondary school outside of the local catchment area. That is, of course a very blinkered reasoning – many of my peers lived in separate villages, and I know for a fact that they still managed to play and socialise together outside of school.

My wife and I have been seeing subtleties in our own little family over the last few months.

My daughter has recently turned four. If you weren’t looking for the subtleties, then you’d most likely see a lovely little girl – indeed we get a lot of comments along these lines. A little shy, maybe, and at times badly behaved, but most of all just a sweet little girl. We see all of this too, but we see far more. We see the daily clumsiness that leads to constantly scraped knees and bumped elbows. We see the anxious little non-verbal periods where she’d just like a hug rather than say anything.The confusion and anxiety in her eyes. We see the subtle problems she is having at nursery school: She often doesn’t want to attend; she doesn’t understand the subtleties of friendships that are at play; she wont join in games unless asked – she just stands on the edge of the game and waits for it to finish. She is also often shattered at the end of a nursery day, and I’ve started to see her produce excuses to work around the very real complications she is experiencing whilst there – “Did you play with Jane today at nursery?”, “Jane isn’t my friend!” (Jane is the nearest my daughter has to a best friend, and it has been this way for the last year). “Who did you play with today?”, “Can’t remember!” (with accompanying shrugs and aloofness). I know how she feels.

My wife and I are both certain that she is showing many signs of being on the autism spectrum, and my wife has reached her conclusions without influence from me. She see’s those patterns that she’s seen in me over the years now playing out in my daughter. I see them too.

Incidentally, my son, who is nearly six, also shows some spectrum traits. His are less pronounced than his younger sister, however.

–

It’s subtle. And that’s just the way it will always be.

If you don’t look for autism, you won’t see it

- at least not until the person does something very unsubtle. Something that is a faux pas.

But don’t ever EVER assume that just because you can’t see it it isn’t there.

Life for those on the spectrum is often difficult and complicated in ways that they simply don’t show you.

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Subtlety

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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.

–

I don’t identify at all with what the above mother holds to be true.

I see autism as an inherited condition. I’m sure that the environment in which you grow up has a bearing too, but fundamentally, I believe that neurological differences are the causes of most of the differences in being that I experience compared to a typical person. I don’t believe that autism can be cured. The brain scans showing atypical brain activity that I’ve read about are one good reason why I believe this. The other, of course is that once again, I believe this is inherited, not acquired – and if it isn’t acquired, it can’t be reversed.

But do you know what?

I really think that our hypothetical mother and me actually have a lot in common.

Firstly, there is a small matter of relentlessness. Our mother will do anything to reverse what happened to her son. To this end, she has spend a huge amount of time researching anything she can find in book form or on the Internet that may offer a hope – no matter how small – of her son improving. Whilst the scenario is different, I know this trait well. It’s the one I indulge in my Special Interests. Let’s take Asperger’s as an example. In the last year, I’ve read and read and read about Asperger’s, until information is spilling out of my ears. I want so much to know and understand how I work, that I’ll spend long hours reading obscure texts to decide whether they apply to me. Along the way I have become very knowledgeable about the information I’ve read, and can talk at length about it. So can our mother. But there’s somethign that we’ve both missed here. Context.

I usually refer to this as seeing intricate detail, but missing the bigger picture. I do this a lot. I can talk at length about how Asperger’s impacts people, but I fail to see how it impacts my wife, and what more I might do to help her, or indeed what I might do to help myself for that matter. None of this often gets a look in. Instead, I continue to fill myself with information about my Special Interest. Our hypothetical mother clearly has a similar problem. She’ll spend hours reading about an obscure new procedure that is largely untested but might just help revert the damage to her son, but she’ll fail to see the well respected reports like this, that show that autism isn’t an epidemic, and that in fact there are just as many autistic adults (albeit many of them undiagnosed) as there are children.

In short, we both see very specific things about autism, but fail to see the bigger picture at times.

We both see intricacy of detail in things too. She sees how a new treatment has lead to a little more eye contact or more words from her son over the last week. I see how I’m a little more anxious this week, after writing about certain topics.

But maybe here we are both missing the bigger picture again. Hypothetical mother is failing to take in how even autistic children develop over time – it is just often delayed or a slower progression than with a typical child. I’m probably reading too much into my anxiety levels too.

We are quite similar, in many ways. But why?

Well, it occurs to me that when children get diagnosed on the autism spectrum these days, it is not uncommon for one or more of their parents or for other family members to start their own journey of autistic self-discovery. Unless of course you are hypothetical mum, because she knows her son was damaged by injections, he didn’t inherit the condition.

But what if he did inherit it? What if he inherited it from his mum?

Maybe we are not so different…

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Maybe we are not so different…

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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.

–

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.

Post from: That Explains Everything

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A new chapter

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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?

Post from: That Explains Everything

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A different sensory overload

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Books make a big thing about getting diagnosed. If you believe what you read, then getting a diagnosis for an Autism Spectrum Disorder is a very important and positive step.

Is this true? The books are almost invariably written by people without autism, so why would they be such a great expert on this?

I’m a little troubled, and I’m going through a round of self-questioning on the topic.

Should I get a formal diagnosis? Should I go and see my GP and try to obtain a diagnosis that way, or should I see someone privately? What would a diagnosis mean for my work? Would it change my relationship with my employer? Would it change the relationship with my wife? How about with other people I know? If any of my relationships were changed by a diagnosis would that be a force for good or not?

There are a lot of questions that the books don’t answer. Indeed, the AS books I’ve read don’t really tackle questions like the above much at all, which is a shame because ultimately those of us wondering about diagnosis need to know the answers to questions like these in order to make a rational decision.

What do I think?

My thoughts all boil down to one statement, which makes it difficult for me to choose a path forward:

Autism is poorly understood in the UK.

Various articles I’ve read on the Internet over the course of the last year (sorry, no specific references for you) suggest that getting a diagnosis here in the UK via the NHS (National Health Service) and your GP (family doctor) isn’t easy. I’ve read of people being told not to be so ridiculous or being asked why on earth they would want to get diagnosed in the first place. This really does highlight just how far behind some other countries the general level of understanding surrounding the Autism Spectrum is here in the UK. If some GPs believe that you can’t possibly have Asperger’s simply because you managed to turn up at their surgery and ask for a diagnosis, then we have a very long way to go on the education front.

If I choose the NHS route, then I have to go to my GP’s surgery extremely well armed, and prepared for a fight. I also need to consider whether a formal NHS diagnosis would serve me best. If I choose the NHS route, then my permanent health record will forever more state that I have Asperger’s. I will be formally classed as disabled in the eyes of the state, and I will have to mention the condition when I go for new jobs, or apply for insurance. I’d even have to notify the DVLA (driver’s registration agency) about it.

Ah yes – jobs. If some doctors seem to have a lack of understanding of Asperger’s, how can I expect employers to view a diagnosis?

For reasons that I can’t really go into, telling my current employer could potentially lose me my job. It probably wouldn’t, mind you, but I wouldn’t be surprised if it led to me being told not to report for work, followed by a battery of tests before a decision was made as to whether I could return to work or not. This may sound draconian, but my current job requires a considerable amount of vetting (with good reason) for everyone that does it. I’ve already had to have my depression in recent years considered, with a statement collected from my family doctor to support my case.

Here in the UK we have laws that intend to prevent job discrimination against people with disabilities. This is a good thing, and I’m sure it has led to a great many people with disabilities getting more fulfilling jobs. But there are, of course ways around laws like this. Consider this:

After a series of interviews, a company narrows down potential job applicants to two. Both interviewed well, and both could do the job well. The employer knows that one of them has Asperger’s, and having read up on the condition, understands that it affects the applicant in a number of ways, including their ability to interact with colleagues and sometimes their ability to produce work under stress. Would you blame the employer for not choosing the candidate with Asperger’s? I wouldn’t. The employer would be well within their rights to take the candidate without Asperger’s, despite employment laws. If the Asperger’s candidate was clearly the best for the role, well that’s a different and tricky matter…

I could, of course decide not to tell any potential new employer that I have a disability. My Asperger’s brain can see the attraction of this, but doesn’t like it one bit. Not telling would be fibbing, and that ultimately gets you into trouble, doesn’t it? In my view, any employer of mine has a legitimate right to know about any illness or other condition that might adversely impact my work. That’s fair. Not telling them really does feel like starting off the working relationship on completely the wrong foot.

Interestingly, my current state of knowing but not having a formal diagnosis sits a lot easier on my shoulders. I don’t feel like I have to tell anyone – like in some way not having a formal diagnosis means that I don’t have the condition. Except of course that I know beyond all reasonable doubt that I do have AS – I’m just missing the piece of paper from someone qualified to make a judgement to confirm it. The hypocrite in me makes an appearance once more.

If an NHS-funded diagnosis would lead to a formal record of disability and a responsibility to tell employers, what would happen if I went for a private diagnosis?

I’d get a piece of paper telling me what I already knew. What I then did with this piece of paper would be completely up to me. I wouldn’t have to tell my GP about it, and hence it wouldn’t have to go on my health record. Would I need to tell my employer? A difficult question, and one that I’m not sure I have a good answer for right now.

My wife’s view regarding my AS and diagnosis is one of worry. Over the last year we have talked about AS and what it means for me (and us) a fair bit. As my understanding of how it affects me has improved, so in time has hers. Being the partner of someone with AS must be difficult. It must be hard to conceive how the person can appear on the surface to be so normal, yet inside they are quite different.

My wife worries that my pursuit – with or without formal diagnosis – of AS will lead me to ‘giving up’. What she means by this is that she worries that I’ll stop acting ‘normal’ – that in some way learning about AS will change my ability to interact with the world. This feels very alien and illogical to me, yet I’ve read very similar accounts of these worries elsewhere, so I take it to be a quite normal neurotypical point of view.

I think, perhaps, that my wife is starting to see just how much of my presentation to the world is an act. Will I stop acting just because I now understand that it is an act? No. Will there be times that I choose not to act to the degree that I have done in the past? Perhaps – and I don’t see that as a negative thing. Learning about and embracing AS is teaching me that it is OK to be who I really am. I don’t have to act like someone that I’m not if I don’t want to – and yes, that is most likely the sort of phrase that scares my wife. But you know what? I do still want to interact with the world, and so I still act. If I didn’t put on my act, I’d have trouble interacting with anyone other than those that know me very well. I’d also have to spend an inordinate amount of time explaining to everyone I met that I was unusual because I had AS, and that no, it was nothing for them to be worried about. I don’t want to live my life like that, so whilst I may choose on occasion to drop my act and just be me, that will be the exception, rather than the norm.

If I’m not going to drop my act around people I know, would I need to tell them I was formally diagnosed with Asperger’s? Perhaps not. Would I feel uncomfortable if they didn’t know? Maybe yes. As I wrote above, though, telling people may be a lot of work for very little gain, and I’m not sure I want to entertain that.

Would I like people to know? Yes. And no.

I would dearly love people to understand that I was autistic and to make little allowances here and there for me to make my life easier. I’d love to be in a position where I could act a little less around people other than those closest to me. I fear the reality of that situation is a long way off. People in the UK simply don’t understand autism right now, and are often naturally suspicious of a condition that they can’t immediately see. I suspect that opening up to people would cause me considerable pain due to unexpected and sometimes negative reactions.

So where does this leave me? Without a definitive answer as to whether a diagnosis is a good idea or not.

A formal NHS diagnosis would buy me some peace with the world, but it wouldn’t make the world treat me any better. Indeed, it could potentially cost me my job, and make it more difficult for me to get a new one. It could cause alienation with people that don’t understand autism or who can’t buy into a condition that they can’t immediately see. Would the less-formal private diagnosis buy me as much peace but without the other side effects? I doubt it.

Yet there is something about obtaining a formal diagnosis that is about negotiating peace with the world. I’ve not fitted in thus far in life, but now I know why. Getting a piece of paper with that diagnosis on may be me formally saying that I accept that I know why I have never fitted in. Obtaining that peace holds a huge amount of attraction to me.

It feels like there is no middle ground here – either you go the whole distance, getting formally diagnosed, being open with everyone about it and accepting the consequences of that, or you don’t pursue diagnosis at all.

It feels like I’m being urged to jump off a cliff on the understanding that I’ll be able to fly. I want so very much to be able to fly that I almost believe what I’m being told.

I want so much to go to my GP and ask him for a formal diagnosis.

But I haven’t made an appointment.

Maybe that says it all.

I would love to hear your thoughts on this tricky subject.

Post from: That Explains Everything

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Diagnosis

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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!

Post from: That Explains Everything

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Where is everyone?

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If you’ve been reading this blog for a while, you’ll know that I discovered my Asperger’s  in the autumn of 2008, when I was thirty five years old.

Until that point in my life, I’d been plagued with feeling different from everyone else, getting into many scrapes of my own making that I didn’t see coming, and generally living in a high stress mode all of the time.

My discovery of Asperger’s, and my subsequent matching of its characteristics to my own personality was my real That Explains Everything moment.

I frequently wonder how my life might have been different if I was growing up today, with the reasonable chance that my differences might have been identified and diagnosed when I was still in childhood. Would my life have been easier or harder?

Let’s look at how it has been for me first:

My life has been lived under the almost constant feeling of high stress. As life has progressed and got correspondingly more complex, so my background stress level has increased. Tasks that a typical person would find to be not stressful at all – such as making a phone call – add intense peaks to my daily stress. Backing up my stress is anxiety. I’ve experienced this since at least my early teens, and it comes and goes in waves. This week I have it quite badly, but last week I was mostly fine. When bad, the anxiety can be crippling. A combination of it and the stress often leave me feeling dumbfounded just by regular life. I sit like a rabbit in the headlights of life, existing, but not really knowing what to do or how to behave.

You need to understand, however, that until a year or so ago, this felt normal for me. Whilst I knew that I was a little different in some way to most other people that I interacted with, I didn’t appreciate just how different I was. So, stress and anxiety felt normal – it’s all part of every day life for everyone. Isn’t it?

Life at work has always been a mixture of success and failure for me. When well guided, I work better than your average person, tend to get on with things without a fuss, and I’ve been well liked by various people that I’ve worked for for these reasons. When I work in a disorganised place, or for bosses who are underhand then I fare far less well. I’ve never been fired, but I’ve come close, and I’ve upset senior people at several companies with what I can now see were inappropriate outbursts. The problem is that I didn’t see them like this at the time. I’ve never seen the potential consequences of my whistle-blower-like activities in companies. I’m speaking the truth – what’s wrong with that? Bad times at companies also increase my stress and anxiety. So it goes.

In my personal life, I’ve been a serial monogamist. Without realising it, I’ve always dated women who could help take control of the areas of my life that I wasn’t very good at.

When I was younger, I held on for dear life to the romantic relationships that I had, and was desolate when they broke up. As I’ve matured (perhaps rather more slowly than a typical person would), I’ve become far more accepting of my responsibilities in relationships, and what I can realistically expect from my partner.

My dating methods have been unusual. When I was younger, it was always the girl that asked me out. I have always been sweet natured and queit and kind (although perhaps in an unusual way). I met my wife via an introduction from a friend and we text messaged first, before graduating to phone calls and then meeting. This took a huge effort on my part – effort that I assumed most other people had to use too to find a suitable partner. Without that introduction, there is a good chance, I think, that I’d still be single now, seven years later. I’ve never gone looking for love in bars, or using other typical methods that people use to meet other people.

I’m thirty six. I went to university, I have a wife, two kids, a house, two cars, and a job. I have a great deal to be thankful for.

How my life would have progressed if I’d been diagnosed with AS as, say, a young teenager:

Well for a starter, I doubt I’d have gone to university. University was expected of me, and hence I went. I didn’t enjoy it, as I failed miserably to make friends, and got though it only with the substantial help of a long term girlfriend.

I’d have decided that university wasn’t for me. So. No degree.

That would have meant that I wouldn’t have joined the graduate recruitment program of a large UK IT company, nor moved to London.

What would I have done for work? I really don’t know. I fell into the computing course at university more out of luck rather than good judgement. I toyed with chemical engineering and architecture first. IT suites me – but would I have seen that if I had been diagnosed with AS at a young age?

I suspect I’d have got a low paid, low status job – maybe a librarian or somesuch. Perhaps my work would have consisted of lots of reasonable short jobs.

I’d be stuck at home with my parents well into adulthood, because I doubt very much that I would have had the confidence to move out. After all – I’d been diagnosed with this big scary condition that made me vulnerable and easily led. My parents wouldn’t have wanted me striking out on my own in that condition, I suspect.

Relationships? I doubt there would have been many, if at all. A man in his twenties, living at home, with no friends, who perhaps doesn’t have a job, and who doesn’t socialise is going to find it difficult to find love. That isn’t rocket science.

And now, at thirty six, where would I be?

My best guess is that I would be living in a rented flat, with no career, and possibly not much regular work. I’d have made a few friends in the autism community, but I wouldn’t be married, and I’d probably have been single for many years. I’d be anxious and depressed, and frankly quite downtrodden and pissed off with the hand that life has dealt me. I would most likely get about by bus, having never learned to drive.

Frightening, isn’t it?

Life has been hard work to get to here, but it felt normal, because I had no expectations that there was really anything fundamentally out of the ordinary with me. I was different yes, but not that different. I got on with life, because that what you do – that’s what everyone does. I had expectations of living an ordinary life, and that’s what I set out to do, and ultimately did.

I genuinely believe that my life expectations, if diagnosed at an early age with AS would be very different. Everyone’s expectations of me would have been far lower, as would my own expectations. Even independent living would be a serious and hard to achieve goal. Life would be a struggle in a very different way to the way in which I’ve found it a struggle in reality.

–

The reason behind my thinking about all of this is perhaps not obvious, but has been knawing at me for a little while.

At times I see some of my AS-like traits in my own children. They are five and three right now. Would I wish them to undergo a diagnosis if it started to become clear that they fitted an ASD profile? It’s a difficult moral question to answer.

Based on how I think my life might have been different, can you guess which way I’m leaning on this right now, should it become an issue?

Post from: That Explains Everything

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Better to know?

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