Diagnosed: Part 2

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.

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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.

Subtlety

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.

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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.

A different focus

I wasn’t intending to have a break in writing these last few weeks – it’s just the way that things have worked out. Interestingly, the reasons behind my lack of writing have ended up being very life-affirming for me.

First, the good news: I was approached by someone I used to work with a couple of months ago, about joining them in a new work venture. At the time, I completely failed to grasp the subtle undertones used by them in their email approach. They asked if I knew of anyone with my job skills who might be available, and incidentally, was I available? I couldn’t think of anyone else, and then told them I wasn’t available right now. They pursued me more, and suggested that the job they had available would be pretty exciting, and that maybe I’d like to pop round and have a chat with them about it in more detail. Having thought things over, I decided against pursuing it further, and politely declined.

End of story.

Well, no. I got another email a couple of weeks ago, asking if I might want to reconsider. It was only really when I read this that I realised just how much they were specifically interested in me, and not in whether I knew of anyone with my sort of skills.  You see, this time they said that they were disappointed that I’d turned them down before, and that they were interested in me because I’d worked with them before, and thought I’d be a great fit in their company. I don’t do subtlety very well – it tends to pass me by. Spell things out though, and well, I can see what is really being said.

So, once I’d picked my jaw up off the floor, I went and had a chat with them, which essentially involved me interviewing them, and them trying to sell the opportunity to me. They succeeded. I join them in a month or so! My skills suit the new job far better than the one I’m doing now. I’m really looking forward to getting stuck into it.

My investigation of my potential new employer shifted my focus somewhat. I found that I was spending a lot of my time thinking about the opportunity, and I also made a concious decision not to do any writing here whilst I was preparing to meet them – to help me focus. Without realising it, my job prospect suddenly took on all the familiar aspects of a special interest, and everything else got pushed to the back burner. I was getting the same intense feelings about the job opportunity as I have been getting most of this year from thinking about Asperger’s. I went from checking my blog visitor stats every hour or two, and ruminating over what to write about several times a day, to not thinking about the blog at all, and checking the stats every few days. Just like that.

The sudden change in focus has surprised me. Introspection regarding Asperger’s, and writing this blog has felt so deeply ingrained in me these last few months, that the possibility of not thinking about it has been, well, unthinkable. And yet, without expecting it, that was exactly what had happened. Initially, I was intrigued.

With Asperger’s shifted from being the core of my thinking, would life be any different?

Well, at times it has felt like a great weight has been lifted from my shoulders. By not ruminating deeply about Asperger’s and not looking in microscopic detail at how it affects my life, I’ve not been seeing as many aspects of my life where I feel that I don’t do well. My mood has lifted – but then again, I’ve got a new and exciting job to look forward to, so my mood is going to have been lifted by that too. I’m sure the lack of Asperger’s special interest has played it’s part, but I can’t solely put down my better outlook on life down to lack of it.

Here’s the really interesting thing for me: I wondered if my lack of focus on AS would make my life better – whether I would somehow revert to being more normal if AS wasn’t the middle – and indeed edges – of my world. I think that deep down, that little grain of self doubt in me that isn’t sure that I have AS wondered if my lack of AS focus would have an impact on my behaviour. Is any of my behaviour simply down to conditioning over the course of this year? Have I talked myself into being an Aspie? Have I played out a stereotypical Aspie interaction with the world simply because I’ve learned to do so?

No. I’ve already admitted that I simply replaced one special interest with another – AS got replaced with new job. I thought about it and poured over the pros and cons of joining a small business in every bit as much detail as I have recently thought about AS. I spent a day pretty much solely tracking down hardware and then making a recommendation about what I’d like to use on my desktop when I join. This was fully costed out, with alternate options, all spelled out in an email that took me hours to write in a way that I felt was just right. I’ve spent another day pouring over Google maps, trying to work out the best commute for the new job, including costing out the various options. In short, I’ve been every bit as focussed and all consumed by my new special interest as I have been by Asperger’s all these months.

And in the mean time, my daily interaction with the world has gone on, pretty much unchanged. On days where my mood has been especially buoyant, I’ve maybe taken a little more time to try and make small talk with folks – but that too is normal. My interaction with the world has always been governed by mood – I have good days and bad days, just like everyone else. It’s my wife’s 40th in less than a month, and I keep finding myself thinking that I must sort out her present. I have been saying this every day for a couple of weeks now, and have only managed to spend a little time on one day actually doing something about it. As usual, on all the other days where I should have been sorting it out, my focus on something else (the new job in this case) means it simple doesn’t cross my mind at a time where I can do something about it – even if I’ve written it down in my book of things to do.

So there you go – despite not thinking about AS, my life has carried on in the same familiar AS-like way that it has always done. If you can sense a little surprise in my writing you’d be right, because that little grain of self doubt can be very powerful. But that little grain of self doubt is wrong. I don’t act Aspie, it is simply, and always has been a part of who I am.

Relationships with women and tales of regret

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

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

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

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

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

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

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

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

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

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

I’m glad I live in the UK.

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

I first heard the term earworm a few years ago, when it was used by one of my online acquaintances. I immediately knew what it referred to, and I suspect that many of you will to.

An earworm is a section of music of song that gets trapped in your head, and goes round and round repeatedly, seemingly beyond your control. I suffer from earworms a lot of the time – they provide a background music for my everyday life.

The degree to which having an earworm is normal for me shows in that I didn’t consciously think much about earworms again from that first introduction to the term a few years ago, until this weekend, when I realised that my usual experience of a single earworm had morphed into a double earworm extravaganza. I had not one tune repeating on an endless loop in my head, I had two. What’s more, the songs were completely different from each other in both style and sentiment, and were chopping and changing between each other at random intervals.

Suddenly my internally-created musical accompaniment to life was a horrid and inescapable jumble of musical phrases that wasn’t sitting well with me at all. The background became foreground, and for a while I found it difficult to concentrate on anything other than the music itself.

It’s now Tuesday afternoon, and one of the two tunes that was annoying me on Sunday is still going around and around now. It has been for most of my waking hours since then. Annoying? Maybe a bit, but like I said, this is normal for me.

Wikipedia says that the degree to which people are affected by earworms varies considerably, but that almost everyone experiences them at some point. They note that people with OCD often report a higher occurrence than the general populace, which I find interesting. As an adult with Asperger’s, I feel most comfortable when gently surrounded by well defined and often practised events and rituals. Not unlike someone who has OCD, in fact. I wonder if there is any correlation there?

Do you suffer from earworms?

Blurry-eyed boy

These days, if you catch me after I’ve been busy for a while, you may find me to be initially unresponsive. Many people over the years have commented that I seem to be away in a little day dream world.

From my perspective it’s no day dream, its more of a shut down.

Let me explain what it feels like:

My eyes lose focus. This is perhaps the single biggest clue that I can read these days to let me know that this sort of shut down is happening. I can cause my eyes to lose focus at will, which feels very calming, but typically when the sort of experience I’m describing happens, it happens automatically.

Despite my lack of visual focus, my eyes will still be looking at something. Something – anything – will be the centre of my vision. This un-focussed focus will move over time from object to object within my sphere of vision.

I will typically be still, and I’m often seated. If not, then my reactions will be distinctly dulled and slow.

My usually very sensitive ears will stop hearing the noises around me.

My brain will be still. Instead of the usual stream of thoughts that race through my head, I’ll find that I’m not really thinking at all. Indeed, I’m not really interacting with my environment at all.

All of this happens automatically, and without me realising it is happening. It feels comfortable, calm and safe. A strange blank contentment fills me.

So, when it looks like I’m day dreaming and you come and ask me a question, its perhaps no surprise that you don’t get a coherent or quick answer. Before I can fully comprehend you, all of my sensory and thought processing has to restart itself, and that takes a few seconds. Indeed, my ability to think sometimes seem to take a few minutes to re-engage properly, almost like I have been asleep.

It isn’t like being asleep though. I’m still aware, to a degree, of the unfocussed world around me. My body has just chosen to shut itself down.

The cause, of course is too much sensory input, and perhaps too much stress on occasion. Rather than face a continued onslaught that my body has started to find uncomfortable, it quietly shuts down, without consulting me.

Whilst my introspection on this trait is new, my experience of it isn’t. I’ve always experienced the blurred eyes, and people have always told me that I appear to be off in my own little world.

In my current world of intense self-discovery, this feels like a wonderful relief. It can be easy to worry that by turning inwards, I’m making my symptoms worse – a self fulfilling prophecy of autistic cut-off from reality.

The blurry-eyed boy has become a blurry-eyed man.

My autism is just the same as it ever was, I can just see it for what it is so much better these days.

Does sensory overload cause you a similar feeling of shutting down? Have people always told you that you appear to be off in a day dream?

Diagnosis

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.