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.

Sparking

I’m highly charged today. Perhaps literally.

For the third day in a row I’m the only person in the office. There are usually three of us, with one of the other chaps spending almost his complete time ensuring that the system we run is performing properly. In his and my other colleague’s absence, it’s down to me to run the ship single handed. I’m busy, and rather agitated too, perhaps because of my routine having been thrown out.

My highly charged emotions might just be making themselves felt – every time I touch something metal today I release a bit of static charge. A little spark that reminds me that I’m feeling on edge by making me jump. This isn’t normal for me, I assure you, but perhaps it is just coincidence.

I feel full of things that needs saying – sparks of expression waiting to be released. They are probably always there, but today they are close to the surface and want to escape – and to be honest some of the sparks trying to get out frighten me a little. I can’t judge whether they are appropriate or not, and for that reason, they are going to stay exactly where they are now – in my head.

Every once in a while I have days like this, and I guess if I look back at the last couple of weeks, it was inevitable that a day like today was coming.

There is so much in me that never gets said, but I really do believe it’s better – well safer at least – that way.

Guilt

I like to think that in general my writing here is upbeat and positive. That isn’t always how I feel though, and this article reflects that. If that isn’t your thing, then maybe you’ll want to skip reading this time. This article also has some adult themes in places. You have been warned.

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Guilt.

I’m feeling a lot of it now, and for very specific reasons.

In short, I don’t feel good enough.

I’m not good enough for my wife, she deserves better. I don’t meet all of her emotional needs, and I typically don’t see when she needs some TLC from me.

When I do see that she needs some TLC, I struggle to know how to respond. It doesn’t come naturally to me. It’s not that I don’t care – I do of course, I just don’t seem to be able to use my brain in a way that allows me to make decisions on what is appropriate in situations like this. “Just buy me a little something every now and then”, she’ll say. But that doesn’t work for me. What do I buy? I have no idea. When inspiration occasionally strikes, I worry that my choice is a bad one. It has been some times in the past, so I now feel I can’t trust the ideas I have.

Most normal people (and I include many men in this) do not have a problem in this area. So why do I? It’s not good enough, and it makes me feel incredibly guilty and frankly quite miserable that I can’t keep my wife happy.

My wife actually put it quite succinctly a few nights ago. It’s like I learned the physical side of intimacy, and paid enough attention to that to ensure that I was proficient, but then forgot about all the other aspects that are involved. I don’t do romance. My wife says she feels neglected at times.

She’s right, of course. Physical intimacy makes sense to me, and everything else surrounding it doesn’t. I’ve always tried to use physical intimacy to express my love, and as such have concentrated on making that side of things special for my loved one. But that doesn’t always work, does it? You can’t always make love to show someone you care. Sometimes they want support or to feel loved in other ways. Could I describe those other ways to you? Erm, well, not easily, no. I really do have trouble in understanding them and putting them into words.

My reliance on the physical aspects of showing love has caught me out in other ways in the past too. I can’t always judge all that well what is appropriate and what isn’t, and have been overtly sexual to female friends. The problem here is that expressing love physically is what seems natural to me. I want to show them I care, and, well, it can get messy and cost friends, as I have found out.

Another area that I don’t feel good enough at is being a parent. Perhaps no-one does – fathers especially.

I have always tried to be very hands on with my kids – I was heavily involved in changing nappies when they were small, and in feeding them, and bathing them and generally caring for them.

But now that they are a little older (they are five and three) I feel decidedly out of my depth. My son is learning to aggressively push boundaries, and his little sister is learning to copy him. This, I would imagine, is trying for the most competent and together of parents, but I’m finding it difficult to find the right words and actions to meter out the right degree of discipline. After a hard day at work for me, they are often noisy and aggressive, and I find that side of things to be a bit much from a sensory point of view. It can sometimes be difficult to keep my own aggression at bay.

Of course this makes me feel incredibly guilty as well, and something of a failure.

The final area where I feel guilty about not being good enough is at work.

I’m working on a contract basis in my current job, so I’m being relatively well paid versus the permanent members of staff. At the moment I’m struggling to actually get work done. There are no two ways about it – I’m not currently worth the money that my employers are paying me. I don’t like letting people down, and hence, once more, I feel very guilty that I’m not pulling my weight.

All of which is very negative and makes me feel very gloomy.

My ideas about what I should be able to achieve and my measures of these ideals are still very neuro typical. When I don’t live up to my own high standards – especially when I feel that my own lack of performance is impacting on other people – I feel very guilty.

Do any of you also feel this sort of guilt?

Better to know?

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?

A bigger quotient

I received an email via the contact page of the website yesterday from Anna. I thought it might be of use to many of you, so here’s what she said:

Hi James,

I’m sure you must have done the AQ test, but I recently saw this PDF
http://www.autismresearchcentre.com/docs/papers/2001_BCetal_AQ.pdf

which shows on page 5 how the 50 different questions break down into five categories – social skill, attention switching, attention to detail, communication and imagination.

Page 9 shows whether a yes or a no for each question gets you a point.

The test is on page 18-21.

It doesn’t matter whether you say definitely or slightly, so I just wrote numbers 1-50 on a bit of paper, and went through the questions writing y or n. Then you can mark it with the key from page 9, and use the details from page 5 to get the category breakdowns.

Then you can look at page 23 to see how your results compare to the AS/HFA and control groups. Page 31 has a graph plotting results for controls/HFA for just the final AQ score.

Anna is right – I took the AQ test last autumn, when I was first starting to suspect I may have AS.

I still have the piece of paper with my results on it from that day, back in September last year. I scored 30. Not a huge score, but it was far enough from the norm to add weight to my suspicions.

Armed with the above link from Anna, I thought I’d try the test again today. With nearly a year’s worth of AS knowledge and considerably better self understanding, I wondered what my result would be this time around.

I scored 43.

Interesting. On some questions I instantly knew what the expected Aspie answer was, and on others I didn’t – which I guess goes to show that I still don’t know everything about my condition even after all this time. I really tried to be honest, and I can genuinely say that many of my results have changed through a better understanding of myself, and appreciating that I don’t behave quite as normally as I thought I did a year ago.

Having said all that I’m sure my self-knowledge will have skewed my results a little in the direction of AS. There were a few questions that were clearly borderline for me, and in each case I plumped for the pro-AS response on these. Had I chosen to score these the other way I would still have got a score of around 40.

Am I any more autistic than I was a year ago? No – I’m just much more aware of how autism touches my life, and more honest about acknowledging it.

Have any of you taken the AQ for a second time? If so, did you also find that your increased self knowledge over time had changed the score?

A holiday?

I’ve spent the last week listening. Listening to how my body reacts when pushed hard. I’ve been quite surprised at what I’ve heard.

I shouldn’t be. My body reacted no differently than it ever has done. What was different this time was that I was seeing it through the eyes of Asperger’s. My old explanations for the ways in which I reacted were cast aside, and I was able to apply some of what I’ve learned over the last year or so, and reach new conclusions.

All at once it was both satisfying, and a little alarming.

So what was I doing to push myself hard? If you don’t have autism, then this isn’t going to sound very strenuous. I was on holiday with my wife and two young kids.

I’m hoping that if you are an autistic parent, you’re nodding in agreement with me now.

I’ve learned over the years that life is exhausting. It hasn’t occurred to me very often that others don’t seem to share the same level of exhaustion as I do in fairly normal situations. When I have seen it, I’ve picked a ready made excuse – I’m unfit, or I’ve been working really heard at work over the last week, and this is just my body reacting to that – I’m sure you get the picture.

Don’t get me wrong – a week packed with activities and two small kids is hard work – no two ways about it, but I wasn’t tired at the end of each day, I was exhausted.

And perhaps for the first time in my life, I really thought about what my exhaustion was. Exhaustion falls into a category I have problems with – it’s really just a concept, and you have to create your own definition. I find concepts in general to be woolly and difficult to define. I found that over the years I had created a definition of exhaustion based on my own experiences, and that my definition wasn’t quite what I thought it was.

My exhaustion wasn’t physical – that was quite surprising. I’d kind of assumed that it was. Yet I could still have gone on a long walk at the end of each and every day of the holiday, despite suffering from my own definition of exhaustion. Sure, I’d prefer to slump into a sofa and relax, but if push came to shove, my body really wasn’t that tired.

It was my mind that was exhausted. It was over-stimulated and stressed, and wanted to stop having to think about everything. And of course, that is how I process social interaction – I think about what is being said to me, and react in what I consider to be an appropriate way. After a full day of two demanding young kids, new scenery to take in and lots of people around me chatting amongst themselves, my brain was waving a little white flag and asking if it might have some quiet time to recover a little.

A pattern emerged. I spent the day working hard, with all of my mental resources firing on full power. At the end of each afternoon, we’d return to my sister-in-law’s house where we were staying for the week, and I’d crash. I’d just slump onto a seat and do nothing for as long as I could get away with it. My brain would do it’s best to block out most of the noise and I’d spend some time reading a newspaper, or on the Internet. A little antisocial? Yes. Necessary? Yes.

After a while, I’d either need to make myself move again, to help with food, or to bath the kids, or I’d reach a point where I felt better again, and ready to join in with the real world once more. Left to my own devices, this took somewhere between an hour and ninety minutes.

Each day the pattern repeated. And then, on Saturday, we had a final day out, and I drove us home – a not inconsiderable four and a half hours or so of driving, mostly on motorways. Saturday was a long day, and we didn’t reach home until around 9pm. By the time the kids were bathed and in bed, and the car unpacked, it was nearer 10pm.

Boy did it show on Sunday. The kids gave us something of a lie in in the morning, and the first few hours of the day went ok for me. I felt tired, but on the whole not too bad. The problems hit around lunch time. My energy dipped, and my brain was telling me it needed quiet time, and lots of it. I became grumpy and snappy at the kids.

We needed to get some food in after our week away, and my wife, who will be looking after the kids single-handed for most of this week asked if she could go on her own, leaving the kids with me. I agreed. Logic told me it was unfair not to. I spent the next two hours playing board games with the kids on the carpet in the lounge – I didn’t have the energy for much else. This worked well – the kids felt engaged with the games, and for the most part behaved themselves. I felt wiped out the whole time, and much of the interaction felt like a lot of effort. What my brain really wanted to do, incidentally, was pursue a special interest. We’d visited the wonderful Brooklands Museum one day in the week, and my brain told me it wanted to go away and research the undeniably interesting history of the birth place of both British motorsport and aviation. I craved this, I’m sure, as a means of escaping from having to interact with anyone. I resisted.

Two hours later, my wife arrived home, and asked if I would cook tea. Feeling really overstimulated, and wanting to do nothing other than go somewhere quiet, I humphed and reluctantly agreed. I agreed, because it meant that I didn’t have to entertain the kids. On the whole, a good move.

After eating, we settled down as a family to watch a film. This, surprisingly, worked wonders. Our entertainment was Disney’s Herbie Fully Loaded. Easy viewing. The light-hearted nature of the film really helped to untangle my brain enormously. I could focus on one input, and forget all the others for an hour and a half.

Wonderful.

I’ve learnt a lot over the last week. It isn’t the fact that I had a busy week at work that means I’m tired when I go on holiday. I don’t feel wiped out at the end of a busy day of holiday because my blood sugars are low, or because I didn’t sleep well the night before. I experience all of these things because I have autism, and I spend my holiday time running at 100% of brain capacity. That’s why I crash at the end of each day. And that’s also why the day after I get home from holiday is really not at all pleasant. My brain needs a proper holiday – not the sort of holiday it had for the previous week.

I need to explain all this to my wife, but I’m feeling reluctant to do so. I’ve set the scene a little over the last day or so, but haven’t really tackled the issue head on. I feel silly and a little pathetic, perhaps because my wife too is tired after our week away. Like I said earlier – a weeks holiday with two small kids is hard work, whether or not you are autistic. So I’m not looking forward to explaining all of the above to my wife.

There’s good news here too, though. In seeing my tiredness for what it really is, I can work towards solutions that will help reduce the problem. I can’t rely on getting time alone to recuperate each day – not with a young family and tired wife, but perhaps we can watch more films together at the end of our holiday days. That really did work well for me, and it kept the kids amused too.

Has anyone got any other suggestions for activities we might try that would keep the kids occupied and allow me some time to calm my overstimulated brain down at the same time?

Life derailed

I’ve written before about how my daily routine is on railway tracks, and that when something comes along that alters the course of my day, I’ll find that I want to continue down those tracks rather than modify my routine to the new schedule.

Well, I’ve recently figured out that the whole bigger picture of my life is like that too.

You see, I grew up in a neurotypical world, with neurotypical expectations, hopes and dreams. I knew I was a little different from the norm, but I really didn’t see how big this chasm was in certain areas until very recently. Thus, neurotypical expectations felt normal and right for me. I had places to get to and things to do. After leaving school there was University to look forward to, and then a life of work, making my way up the career ladder. Somewhere along the way I expected to gain a wife, kids and progressively bigger and more comfortable houses to live in. I was expecting to lead a typical middle-class British life.

In some ways I did. I went to university, and got a good degree. I migrated into the world of work without too much pain either, and made an impression on people for providing the results they asked for. Indeed, it took several years before it became apparent that not everything was as plain sailing as I thought it would be.

I guess the wheels started to come off the wagon when, three years into my work life, I broke up with my girlfriend of six years. Sadly, the relationship had deteriorated in a way that left us as friends and little more. I decided it was over, and we parted company – the one and only time in my life where I’ve ended a relationship. In a neurotypical way I  imagined that once I was out of this relationship, I’d meet someone else in due course. But I didn’t – not for several years. Instead I failed miserably to get my act together.

And then there was work. I’d been getting into trouble either for being too outspoken (something that I’ve written about before), and occasionally for not knuckling down and working hard when it was needed. I had developed an eye for seeing the ridiculous and unjust in the work environment, but had poor control over voicing my opinions. I was no longer the model employee that people turned to to get things done. I was the loose cannon that took a bit more managing than my peers, though with management I still produced good results most of the time, and was still valued.

Instead of trying to understand why life wasn’t going as planned, and trying to sort out my working problems, I pulled a trick that you can get away with when you work in IT in the UK – I moved jobs – sometimes within the company, and at other times to other companies. I was in a repeating cycle of joining a team full of enthusiasm, taking on responsibility and delivering on it initially, then starting to see the problems in the company, getting stressed, moaning about it inappropriately, failing to deliver what I said I’d do and then moving on once more.

After six years and six jobs in three companies I was a senior technician, well paid, but out of control. In the last months of my third job I was given a junior management role that involved looking after a track of work, and four technical staff. It went badly wrong, and I left the company, and ultimately my whole working life in London behind.

A big problem for me was that I could see my peers doing well. Many of them grew up with the same middle class values and aspirations as me, and I watched them climb the corporate ladder. That step into junior management that I found impossible was typically tackled by my peers with ease. Why couldn’t I do it? Why was the whole process of people management so intolerably stressful to me?

In the months leading up to work exploding, I’d been introduced by an old friend to a lovely woman who lived and worked in the town where I had grown up in Yorkshire. Our relationship was going well, so I left London behind, and followed my girlfriend (later to be my wife) back to Yorkshire. After six months of doing very little, I took up work again, in a much less senior technical role. That worked better, and for a while I consoled myself that I ‘just wasn’t ready’ for a management position, but that in time I would be.

A little over a year ago the chance arose for me to become departmental manager for the company I was at the time working for – to fill the boots of someone who was leaving. I walked away and left the company. I knew that I wouldn’t be able to hack it.

Where had my middle class dreams gone?

Well, these days, of course, I know the answer. My aspirations of climbing the corporate ladder, and everything that goes along with that typical middle class existence are the dreams of a neurotypical person. I’m simply not neurologically cut out for management, and – lets be honest here – I never will be. I don’t understand office politics and I come across as being hopelessly naive and optimistic a lot of the time, and lazy and rude at others. I now know and accept this.

Why then can’t I accept that my dreams of having a typical middle-class lifestyle simply aren’t going to happen? Well, it’s like I said at the top – my aspirations have been derailed, but my train wants to keep on going in that familiar straight line, chasing the dream that I can’t possible achieve. I’m finding this dream surprisingly difficult to shake, and reality difficult to accept.

The gulf between dream and reality shows itself frequently to me in every day life. I work with smart people, who run their own businesses, and know others, younger than me, who are doing very well in management. I live in an affluent village, and see other parents dropping their kids at school from large new expensive cars. I see the large new cars parked outside large houses too. This is the lifestyle that I was brought up to expect, and yet I can’t realistically hope to have it.

Does that matter? Yes – it feels as though it does.

But does it really matter? No. Look at what I have achieved. I have a lovely and very underastanding wife, and two great kids. As a family we live in a modest but large enough house in a lovely village. We eat well and can afford to run two cars (albeit old and small ones), and have enough spare cash for the odd treat. What’s more, because I understand and accept my limitations and their causes these days, I am in a good position to make work choices in the future that fit my skills better.  Whilst I can be a trouble maker at work, I’m also generally good at delivering the sort of results that people want as long as I’m well managed, and with a bit of practice maybe I can keep the trouble maker at bay now that I know what triggers his appearance.

Life is good. Now if only I could get my train to take the branch line off to the left that leads to Satisfaction rather than going straight on towards Middle-class Central…

Dysfunction

In the mid nineties, home computers were far less powerful and considerably more expensive than they are now. As a newly graduated Computer Sciences student, I wanted the best computer I could afford, and yet I had very little by way of disposable income to play with. To work around this problem, I decided to build my own desktop PC, so I could choose the parts that thought represented the best value for money at the time, and I also then decided to overclock the CPU. This was then (and to some degree still is) one of the easy and free ways to grab a little extra performance out of your PC, by making the CPU process more instructions per second than it is supposed to.

Unfortunately, overclocking doesn’t always work. If the CPU you bought was already running near the limit of it’s capabilities, then overclocking it can cause your machine to crash. And so it was for the machine I built. When the machine was idle or working at well under capacity, then it was fine. It would trundle along happily for days. Then when you asked it to do something that was intensive on the CPU it would crash within minutes.

I’m using the above as a metaphor for my life right now. My life is a little like my mid-nineties PC. I can manage the low-level and background tasks reasonable well, but ask me to do something more complex and I’m struggling.

In aspie terms, my executive function is failing me badly right now.

This is nothing unusual. My executive function isn’t wonderful at the best of times. I’m typically disorganised, and unless I’m prompted in some way about events like birthdays or Father’s Day (this Sunday here in the UK), then I’ll forget about them. I use a to-do list each day, but often have trouble thinking ahead regarding what needs to be on the list. I’m used to all of this however, and I’ve never been better set up to stay relatively organised, and thus under the radar of typical people.

The current problems that I have are very familiar, however. I’ve had this sort of problem frequently, for as far back as I can remember. Simply saying that my executive functioning is worse than normal doesn’t really cover it, but it does provide a starting point – a key if you like – for how the problem presents itself.

Right now, planning and execution feel really difficult for me – far more so than normal. Getting items on my to-do list is proving difficult, as I’m forgetting to write them down when they occur to me. Then, of course, I’m forgetting what it was that occurred to me in the first place. I’ll pick up my list book, and sit there thinking that there was something that I needed to do, but completely failing to remember what it was. I have trouble with having a small working memory at the best of times, but right now it feels thimble sized. If I don’t immediately concentrate on the item in my working memory and externalise it in some way, then it is gone, and very difficult for me to retrieve later.

By way of example, over the last couple of weeks I’ve come up with various ideas for articles for this blog, but at times where I’ve not been near a computer to jot them down. I haven’t the faintest idea what those ideas were now, despite feeling that they had legs at the time. What a shame.

I’m not faring any better once I have items on my list. Instead of checking the list regularly to see what I need to do next, I find that I’m forgetting to look at it. Worse, when I do look at it, I’m oddly finding that I’m not properly taking in what’s there. This means that sometimes I only see half the list, and then miss the equally important items on the other half. It’s not a concious decision, it just happens.

When I forget to look, I often find that I’m procrastinating my time away browsing the Internet, following links about an arbitrary subject. This has been happening a lot over the last couple of weeks, and large tracts of time disappear without me realising it’s happening. This following of links about a subject is a soothing mechanism that I have, and I take in large quantities of typically useless information.

When I do drag myself back to tackling list items, I’m finding that I just can’t get started. In the past I’d simply have put this down to a lack of motivation – after all, that’s the problem that typical people have in this sort of situation. It’s more than that though, because it’s not just dull work tasks that are getting affected by this problem, it’s more interesting personal tasks too. It feels like there is some huge physical hurdle that I need to get over to get down to tasks right now. That’s not a lack of motivation, it’s a lack of executive function.

When I do finally get down to starting tasks, then I manage them reasonably well. Well, that is, if you consider working on a single task until it’s done to be a good thing. Frequently it isn’t, and I should be dividing my time up between tasks, especially at work. That isn’t really happening right now, where as normally I’d manage this much of the time, as long as the tasks were on my list.

Along with all this executive dysfunction and working memory issues go various other familiar characteristics. I’m very blank and unfocussed right now. I appear to be drifting through life. My usually very active brain is dull and just ticking over. It feels a little like that feeling I get after too much sensory input – like I’ve withdrawn to be alone, but instead of that lasting a half hour or so, it’s been going on for days, or maybe even weeks now. I have no spark, no zone. My special interests – this blog for one – appear to have fallen by the way side for the most part. I’m quiet and uncommunicative. My routine doesn’t seem to be fully happening – not because I’m choosing to do something different, but just because I seem to be forgetting it.

I’m not sure if this sort of way of being has a trigger. I can’t think of anything in particular that has set this one off. Perhaps it’s just cyclic. Perhaps it’s a change in brain chemistry for some reason.

Maybe, and I whisper this, as it feels like a slightly scary proposition, it’s just that after a long period of acting as NT as I can, my brain waves a white flag and gives up. Perhaps this is just the more naturally autistic version of me, where my brain and nervous system are refusing to try and live up to NT expectations as they have become worn out doing it.

I do feel like I need a holiday. I am tired, and my life is hectic and not well organised right now. So just maybe my whisper is reality. Maybe my body can’t keep up the pretence right now, and the exaggerated (versus my normal state) executive dysfunction and working memory issues are the end result.

Whatever it is, I’d be willing to bet my mid-90′s PC would understand how I feel right now.

The quiet one

I wrote recently about dinner party that my wife and I hosted last month, and about how well it went. Well, last weekend the six of us present that night had dinner together again, with another of the couples acting as hosts.

The evening didn’t go so well for me this time. It wasn’t that I was too quiet, or that I felt too overloaded – I coped with both of those things reasonably well. The problem this time was that some of the topics of conversation hit home just how much of an outsider I am. The other guests, of course didn’t know or even notice this.

The big thing that the six of us have in common, and ultimately the reason we became friends is that we each have a son who started at the same local school in January this year. We’ve known one of the couples since before our son was born – they went to the same parenting class as us. We’ve not known the other couple as long socially, although our son went to the same nursery as theirs. The mothers in the other two couples are both teachers of kids their own age, but at different schools. Much of our conversation over the evening flowed around school annoyances, and in particular the social etiquette of parents at the school gates.

At the core of these discussions were how some parents were rude and cliquey. Our sons are in a class of nearly thirty, so on a typical morning, once you’ve discounted the kids that arrive with one of a couple of childminders, there are over twenty parents dropping their children off for my son’s class. Some, of course are friendly. Others, it would seem, aren’t. The five other adults at the table that evening had all been variously blanked, ignored, or cut short by some of the other parents in the school yard. There was a lot made of how incredibly rude this was, and much musing as to why various sets of parents would talk to each other but blank parents of other children in the same year.

This all went very much over my head, with a bit of a feeling of horror. I take my son to school once or twice a week on average, depending on my shift pattern. After nearly six months of this, I recognise only a handful of the parents. Many are still unfamiliar faces to me. I’ve never been blanked nor cut short by anyone – but then again I’ve never made the effort to approach parents that I don’t know and introduce myself. As for who is the parent of which child – well I haven’t got a clue, and nor do I know what the children or parents are called. It became very clear to me over dinner that my normal mode of operation in this sort of scenario was very out of the ordinary. I felt quite ashamed and embarrassed. I’m well aware these days that I’m a little different from the norm, but I’m not used to having it pointed out (albeit inadvertently) just how unusual and unsophisticated my interaction with other people is.

I felt awful during dinner, but I didn’t let it show. It felt like I was one of these parents who my friends (ok, not sure of the best word here – friends are a tricky concept for me) were laying into. I was being overly hard on myself, of course.

Whilst I don’t talk to the other parents in the school yard much, I will say hello back to folks, and even engage in a little small talk, as long as the other person is doing the hard work of thinking up the direction of the conversation. But this is always with people I know already – the adults from the dinner party, and a couple of others who I know because my son went to Nursery with their child too. I’m not being cliquey or rude. I’m just finding the social etiquette of the school parent role difficult to master. The odd thing, from my perspective is that until that evening, I didn’t think I was finding it difficult to master. I was just doing what I always do in this sort of situation. I thought I was doing fine.

I am doing fine. I’m doing as well as I can hope to do at the moment. I’m just different from the norm.

Of course what this thread of conversation also showed is just how well I do hide my AS. Not once was there any suggestion from any of the gang that I might fall into the camp of those who don’t communicate with them. But these people already know me, and will happily start and perpetuate small talk with me at the school gates. This of course means that they don’t see how I go out of my way to avoid talking to the other people, to those I don’t know.

But maybe those who I don’t know think I’m rude because I don’t talk to them.

I’m not. I’m just coping the best I can.

Loud noise feedback

Maybe this is normal. I don’t really want to go round asking people though, because they’ll most likely think I’m mad, regardless of which outcome turns out to be normal.

Whatever the case, it’s my Aspie trait of spotting the tiniest of details in things that’s lead me to spotting this, and then wondering what it was.
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