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.

Is this what we’re all living for today?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What more could you want from music?

Waiting for, well, something that never comes

The last few days have been somewhat plagued by this feeling. I’m anxiously waiting for something that never arrives.

What is it that I’m waiting for? Well over the last few days, it’s been a number of things.

Calls to third-parties at work result in “I’ll call you back”. I then sit there waiting for the call back. Someone emails me asking a question. It looks urgent. I respond immediately, but ask a question of my own for clarification on some point. I then sit and wait for a response, which never comes. I check the stats on my blog. Then I check them again. Then again. Then again. Have they gone up from the last time I checked?

These are all manifestations of the same sort of issue. I’m expecting some sort of immediate response, based on criteria that I’ve set myself. I then sit there anxiously waiting for the response to arrive, unable to do anything else in the mean time, in case I then miss the response.

Part of this is a logic problem, I think. When someone says, “I’ll get someone on that right away – they’ll give you a call”, I take it to mean that some one will be calling me imminently. I don’t want to miss the call, so I sit there waiting for the call. Doing nothing.

Part of it is also that I can’t really hold much info from a variety of jobs in my head at the same time. If I persuade myself that I’m not going to be getting the phone call any time soon and then go and work on some other task, chances are that when the person does call me back, I’ll find it difficult to switch back to that original task. I find that awkward and embarrassing, so I try and avoid it.

The website stats issue I mentioned may look like something different, but I don’t think it is. When I find myself repetitively looking at the stats, it’s like I’m waiting for something. I don’t know what. But those familiar feelings of anxiety and of having to concentrate on nothing else are there in spades. Perhaps knowing that people are reading that I’ve written makes me feel like they are communicating with me in some way – a little like the guy eventually calling me back at work.

What I really need, of course is to shift the anxiety. None of the above are anything like this much of a problem with my anxiety levels are lower.

Do any of you have any anxiety busting tips?

Update: It’s a few hours now since I published, and non of you have been visiting to push my stats up! Have you any idea how badly that affects my anxiety?!?

…and for the avoidance of doubt, that was a joke.

Oh no, I’ve done it again!

It’s my first day back at work today, after a week of holiday.

I arrived at work a little after 0930, switched on the various PCs on my desk, and started to work through the large volume of email that had built up over the week.

And then it happened. It always happens.

I read an email that suggested that a fix that I had proposed for something that I was working on before my holiday was wrong. I was suddenly filled with self doubt. How could I have been so stupid? What must these people think of me for suggesting a solution that was wrong? Can I go home and curl up in a little ball now please?

I say this always happens – but of course it doesn’t always happen like the above. It is very common, however for me to arrive back at work from an absence and struggle to confidently pick things up from where I’d left them. It doesn’t take much to knock my confidence. I also find that in the short time that I’ve been away, I’ve forgotten the detail of the items I was working on.

So when I was confronted by an email that said my proposed solution was wrong in a number of ways, my natural reaction, countering my loss of detailed information about the issue was to assume what they were saying was right. A very familiar problem for me.

Lucky then, that I have something of a solution for this problem these days.

Instead of firing a quick email reply back apologising profusely for my mistakes, I held tight and went back to basics. Firstly, I wrote down what I thought the solution would be – that I’d made a bit of an error, but that it wasn’t as large as the email had suggested. This was an initial brain dump for me – a starting point of what I did remember about the problem.

I then went away and spent an hour researching and thinking about the problem once more. Then I wrote my email reply. I didn’t really know what it’d say before I wrote it – my thoughts didn’t fully make sense to me until I’d done the writing. How very typical – I can order my thoughts on paper, but not easily in my head or indeed verbally.

How well did my reply match what I thought the solution would be before I started researching? It didn’t. Not at all.

You see, I wasn’t wrong in my original solution to the issue. The colleague who had questioned it had some wrong assumptions.

Until recently, I’d have trusted the other person’s assertions, and would have written a very apologetic email back straight away, before later having to retract my apology when it became clear that I wasn’t after all wrong. That was terrible for my self esteem both at the point where I’d apologise, and also at the later point where I’d have to go back and say that sorry, I wasn’t wrong after all. Horrible.

So if I used to trust other peoples assertions in these matters, do I now trust my own? No – as you can see from my above writing, I still thought I was in the wrong. The assertions of my colleague made so much sense to me, and came from someone I trust and respect. They couldn’t be wrong, could they?

I can’t change my neurology. I’m always going to lose sight of detailed information of technical work issues after only a short period of time. I’m always going to be able to see the inherent logic in those who say my solution is wrong. Hey – if I trust the person and I no longer have the detailed information at hand to show they are wrong, who am I to argue?

Perhaps this subtly shows a larger picture of how I interact with people on a day to day basis. I either trust someone or I don’t. If I trust them, and if what they are saying sounds logical, then I assume they are right and that they are telling the truth. This is why sarcasm is often lost on me, and why I can be gullible. This is just how it works for me – it isn’t optional, and I don’t do it out of choice.

I can’t change my neurology, but I can change my response. Holding back on immediately replying in situations like this – regardless of how compulsive it feels to respond immediately – can and does often work. It doesn’t stop my initial feelings of stupidity from happening, but it does at least offer the possibility of me saving some of my precious self esteem.

Tools of the trade

In the front left pocket of my jeans is a pen. And my mobile phone. Oh, and a tiny little USB thumb drive with data for things I’m working on. That last item is a new addition in the last couple of months.

In the front right pocket of my jeans are all my coins, and some used tissues. I know. The tissues should really be in the bin. If I need to take my watch off – like when I bath the kids, for instance – it goes in that pocket too, despite me wearing it on my left wrist.

In the back right pocket of my jeans are receipts that I’ve not dealt with yet. The back left pocket of my jeans is always empty.

In my coat, the left hand inside pocket has my wallet, and my list book. The inside right pocket has any keys I happen to have with me.

Predictable.

Comfortable.

Of course, when I’m at work, the pen, the list book and my phone will all be in front of me on my work table – but that’s predictable too.

I’m fussy about the tools I use.

The pen is a Fisher Space Pen, in brushed chrome. I love its simple lines, its small size when shut, and the feel of the brushed metal in my hand. I can of course depend on it to write on anything too.

The list book is a Italian leather-bound lined CIAK Notebook. Its small enough to fit into my coat pocket, yet large enough to be useful. The paper is thick and a lovely cream colour. It is a pleasure to use.

I carry the pen and the book because I need a list to help me organise my day. The list tells a tale of predictability too.

Each day gets it’s own double page in the book.

At the top of right hand page, I write the date:

Wednesday 20090806

My head likes the logic of the date format  use, which has come from my life in IT. If you view the date as a number in its own right, then the number will always be bigger than it was yesterday. I always underline it too. This date format can have hours minutes and seconds added to it too without the incremental pattern breaking, though clearly this level of detail isn’t needed here.

Below the date is a blank line, and then a list of items that I need to do for work that day. I leave a space at the start of the line for a priority number that I can add later, and then I draw a little check box, and then write the task. I use a number of shorthand tricks:

□ #5437: @PC – What needed?
□ Call @TG – place order?
□ AHU4: Fault. Raise call?

At the bottom of the right hand page I write a letter to indicate which shift I am on at work, and then my actual start and end times. Below this I’ll note any time taken for lunch, and next to the time worked I’ll tot up the total for the day, when it’s time for me to go home:

L: 0945 – 1815    8h15m
15m lunch

Above this, I leave a blank line, and then write my list of tasks for the day that are non work related, back up the page towards the other set of tasks.

With my lists written, I can then prioritise. The priorities go before the checkbox, as I mentioned above. I use the following:

* 1 2 3

I hand draw the star as a five pointer, and it generally indicates something I really have to get done. You can guess how priorities 1 to 3 stack up after this.

Occasionally I draw a star with a circle round it. This is used rarely and indicates something that really really really needs to get done that day

I don’t always tackle the list in the order of priority I have assigned. They are my rules, so I can break them as much as I like too. Generally, if I have a 1 or 2 priority item that I know will only take a few minutes to complete, I’ll do that before I tackle a star item that I know will take longer. I have no hard and fast rules about whether work items should be tackled before non-work items.

When I complete an item, the check box for it gets a tick, and I feel a degree of satisfaction.

If some event of interest happens at work, that I might need to refer back to at a later date, I write it between the two lists on the right hand page.

As the day progresses, I’ll start to use the left hand page in the list book. This serves multiple purposes.

Firstly, starting at the bottom, and working up, I’ll list items I’ve spent:

□ Cash in +50
□ Lunch 4.23c
□ Tesco 78.45d -> 16 clothes + groceries

There’s that shorthand again. The ‘c’ or ‘d’ after the amount indicates cash or debit card, and I categorise how our money is spent (Hey – they are just more lists when it comes right down to it). Eventually this all feeds into Wesabe, where I track our spending habits. At that point, the check box will get a tick.

At the top of the left hand page, I’ll often add events happening that day:

* @1030: Team conf call
* Collect A from Nursery on way home

The rest of the page is used for whatever it is needed for. This could be work or non-work related notes, or more frequently sub lists where a work-related list item is broken down into smaller items, each with their own check boxes so I know what I’ve got done.

Weekends are of course rather simpler. There is just one list, and no work times to note.

So there you have it.

You know, until I actually wrote about it just now, I really wasn’t aware of just how much effort I’ve put into devising this system. If you’re not autistic then you’ll probably think I’m crazy to have thought about this so much. If you’re on the spectrum, then I hope that you’ll see just how much order it adds to my life, and can appreciate how much it helps me to get things done.