It always does.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Out of the blue

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These thoughts have been on my mind recently, so I thought I’d write about them a little.

I have considerable trouble expressing myself clearly to other people, particularly when feelings are involved. There are a few problems at play here, that conspire together to make something that should be straight forward just too difficult a lot of the time.

The first big problem is who to express myself to. My observation of the world over the years suggests that my answer to this question is rather different to that of most people. My best guess is that the usual answer is that you should speak to the person that is most appropriate. That may be your spouse, close friends, family, more casual friends, business colleagues, your doctor, your counsellor, the girl behind the bar. The answer really depends on what you need to express and why.

The answer that works for me, however, is to talk to my wife. I rarely confide in anyone else. Why? Well, as you’ve quite likely read before on this blog, friends are something of a problem and an enigma to me. I’ve never really managed to have good friends from my early teens, when life started to get beyond friends being there to play simple games with. I dont have an inner circle of trusted people in my life, or even an outer circle for that matter. I have my wife.

Secondly, there is a language problem. I’ve tried to explain this before on the blog, I think. I often find it difficult to translate my thoughts and feelings into words. Its like I speak a different language inside my head, one based far more on visuals than on words themselves. Sometimes, I can’t find the right verbal words to express what I’m thinking or feeling. I know how I think or feel, but I can’t express that to you in any sort of meaningful way.

Another issue at play is really a consequence of the other two, and of a lifetime of faux-pas. My self confidence is shot. A lack of self confidence compounds the above two problems, and means that I often don’t trust that my thoughts and feelings are worthwhile or even correct.

When added together, these problems make a potent block on self expression.

What happens when you don’t express your thoughts and feelings? In my case they get bottled up. I have bottled up my feelings for years, and the more this happens, the more they create a pressure that needs to be relieved.

The sort of self expression that ends up happening via pressure relief is often unpleasant. It frequently shows via anxiety or depression or both. Confusion and desperation can also put in an appearance, turning something that may have started out as a minor annoyance or even as a pleasant thought into a seemingly bleak hopeless spiral, which is often ends up expressed horribly inappropriately.

Clearly, bottling things up is not a good option although I do an enormous amount of it.

What I try and do these days to counter this problem is write.

This blog is more about self expression than anything else. It doesn’t really matter whether anyone reads what I write, although I’m continually amazed and flattered that people do, and from time to time find it useful. What really matters to me, is that this blog gives me an opportunity to express myself in an unhindered way. What you read here is pure me, with all of my faults. Indeed, my openness has grown over the time that I have been writing here. Unfortunately though, I can’t express everything that I would like to. There are some areas that are just too personal to cover. Whilst I write pseudonymously, there are people who read this blog and do know me in real life.

Writing works, though. With writing, I have the time and ability to express what I want to say clearly. I can (and do) go back and revise what I’ve written, sometimes several times, before I publish my thoughts. I like that – it works well for me, and I end up feeling like I’ve expressed my inner thoughts quite well. It is satisfying, and is also often something of a pressure relief valve.

How do I deal with those other thoughts and feelings that I can’t express here? At the moment, I don’t. That’s really not good.

I’ve paid for counselling in the past, and found that with the right counsellor, I can and do open up and express the sorts of thoughts and feelings I can’t express in any other way. I can’t afford to pay for a counsellor for the rest of my life though, which leaves me wondering if there is a solution.

Do you have any suggestions? How do you cope with this sort of problem?

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Self expression

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

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

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

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

So. What happened on D day?

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

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

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

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

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

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

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

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

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

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

So there you go.

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

–

So, where next?

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

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

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

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Diagnosed: Part 2

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I work in IT, and this trip was to visit the data centre we use to house our computer servers, with the main task being to fit out and commission a whole new cabinet with 20 servers and all the associated wiring and everything else that is needed to make things work.

I wasn’t on my own for this trip – John, my colleague was flying with me.

We worked hard, putting in ten hour days without a break for lunch, finished yet more bits and bobs of work after dinner in the evening, and tackled unexpected adversity along the way. At the end of it all, I described my overall feeling about the week to John in one word – brutal.

It really was hard work, but whereas John is just suffering from being rather tired today, I’m suffering from a great deal of stress and anxiety, as well as feeling completely overstimulated and exhausted. Am I being overly dramatic about this? Well, I certainly don’t feel like I’m making more of this than is really there.

Over the course of the four days, I was focussed and got things done. There was no other option, and I felt like a lot of weight was on my shoulders to achieve the goals that we’d set ourselves. When things went wrong – and they did in a fairly major and completely unanticipated way – I just had to suck it up and make things work again. Whilst that was clearly stressful, my body and mind stepped up a gear and let me take control. I felt stressed, but at the same time I was ultra focussed to, so it was manageable.

To further complicate my week, I agreed to drive John and me around. This being just about anywhere in the world outside of the UK meant that of course I would be driving a car on the other side of the road than I’m used to. I’ve never driven abroad before. I was extremely anxious on the first drive from the airport to the hotel, but it passed without incident. As the days passed, I grew more confident with the driving, and my brain adapted to the gear stick being on the other side, although it never quite grasped that the handbrake was on the other side too.

By the time of my final drive back to the airport, I was in control enough to not only take in the road ahead and the other traffic, but also the sat nav too, so I could see in advance where I was going, and even to chat a bit with John. On the first couple of days, John had to resort to telling me where the sat nav was suggesting we go at each and every junction – he was Sat Nav Plus.

When our plane landed back in the UK yesterday afternoon, and we’d worked our way through the slow snake-like queue to get through passport control, something in my mind changed.

I got in my car, and started the drive home. I was suddenly feeling very stressed and anxious. The traffic was bad, and so was the weather – a total contrast to what I had experienced just an hour or two earlier in Holland.

My mood plummeted, and I felt very jittery indeed. Anxiety bubbled out of every pore. Not anxiety about anything in particular. Just anxiety.

I think that when I landed back in the UK, my mind stopped holding everything in. I’d slurped up a lot of stress and anxiety over the course of the week, and it was now taking the opportunity to force its way out of me.

I still feel that way today, although the edge has been taken off it a little – it feels less raw and uncontrolled.

My mind is unusually blank today, and I keep finding my eyes unfocussing. Indeed I’m so blank that I’m actually finding it quite difficult to write this. I had so much to say, and yet the visible chunks of sentences in my head are drifting off into the distance before I get a chance to get them written.These are the signs I usually associate with sensory overload. I’m not sensorily overloaded right now, but I guess that this too is something of a delayed reaction to sensory input I’ve had earlier in the week.

Something unconscious in me allowed me function above my abilities for most of this week. Now my mind and body are saying it is pay back time.

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Pay back time

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

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

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

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

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

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

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Glass half full

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

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

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

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

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

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

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

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

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

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

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

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

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

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

–

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

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

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

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

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

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Subtlety

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

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

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

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

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

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

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

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

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

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

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

Post from: That Explains Everything

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Fallout

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Firstly a warning. It’s not usual for there to be coarse language in my posts, but this post is an exception. Consider yourselves warned.

On Saturday night, my wife and I went to the theatre. But it was no ordinary play we were going to see, it was The Rocky Horror Show. You may or may not have come across this masterpiece of 70s kitsch rock opera, but if you haven’t, I’d best give a little background, as you’ll need it to help put my experience of the evening into context.

Rocky Horror is, well, a British institution. Gothic horror, sexual liberation and blurring of gender roles are the big themes, and it has a huge and very loyal following of mainly thirty-something Brits, who – man and woman alike – dress up lavishly, often in basques and fish-net stockings with suspenders to sing along and shout things at the players that over the last thirty years or so have become completely woven into the story.

So this isn’t your usual sort of theatre production. It owes more to a rock concert mixed with another British staple of theatre, the pantomime. The stage show is outrageous, the audience’s costumes are outrageous, and the audience participation is outrageous too, but all deliberately so, with a large amount of tongue in cheek thrown in.

If you are on the autism spectrum, you are probably now wondering why on earth I went to a show like this. Well, you have a good point, really.

My wife is a veteran of the stage show, so it is difficult to keep her away when the tour is in our neighbourhood, and I went with her for the first time a couple for years ago. We have the film too, and I enjoy the rock opera and find the themes fun. Despite this clearly being something of a minefield for an Aspie, there is also the potential there to have a good time.

On my first visit I didn’t dress up. This is perfectly acceptable – whilst dressing outrageously is the norm, the atmosphere is very relaxed, and frankly no one bats an eyelid if you haven’t dressed up. I felt out of place though, primarily, I felt at the time, due to the lack of costume, so for this visit, I was determined to go dressed up. Not in fishnets and a basque, mind you – that would make me feel more uncomfortable than not dressing up at all. Instead, I settled on a glitzy black evening suite with a red bow tie, red conical cardboard party hat and large sunglasses – a theme based on some of the background characters in the film version. My wife dressed in her usual Rocky outfit of fishnets, black mini dress, red feather boa, maids apron, crimped hair and white face paint. We both looked the part.

But that was where things started going wrong, really. If I was going to pull this off, I was going to need to arrive relaxed and happy, and with time to get a drink from the bar to relax me a little. Our plan built in time for this, but it wasn’t to be. We should have left at 19:00 for the thirty-five drive to the theatre, leaving plenty time for that drink and to soak up the happy atmosphere before the show started at 20:30. I was ready at 18:45, but my wife was running late, and we didn’t leave until 19:20. Un oh. Not to worry, I thought to myself, we’ll still have half an hour once we arrive before the show starts. Rewinding a little, during the afternoon, I checked our route to the theatre, and where we were going to park. I’d even updated the sat-nav software on my phone – Nokia have recently made the navigation free to use, so I wanted to make sure that if I needed it, it’d be there without me having to panic.

Half way there, and signs start showing on the motorway matrix signs – ‘Slow traffic ahead’, and ‘J28-J26 Delays’. Oh. No. We need to get off at J26. And then we met the tail of the queue midway between J29 and J28. We stopped. And then we didn’t move for the next five minutes. Oh dear. It’s about a quarter to eight.

Never mind, I tell my wife – we can come off at J28 and take the A road to the venue rather than the motorway. I know the road goes in the right direction, but I don’t know it well enough to drive unaided. I pull my phone out of my pocket, and start the sat nav software. I pull the theatre tickets out my pocket and get the street address of the theatre. It calculates the route for me, leaving the motorway at J26. So – and here is my first mistake – I go into the menus, and choose the alternative route option. This, I think calculates a different route for you – the non-obvious route. It now says I need to leave at J28, which is a mile and a half away. Great! Well, as you’ll see in a minute, it wasn’t, but I’m getting ahead of myself here.

First, I had to contend with a surprise. No sooner had we started crawling along the motorway once more, than the sat nav software pops up a message, tellling me that my navigation subscription ran out three months ago. I f I wish to use the navigation feature, I’ll have to resubscribe. What? But is’s free now! I really need the navigation, so I choose the path of least resistance, and dig out my credit card, and pay, whilst crawling along at 5MPH. There. Done. Phew.

We reach J28 at about 20:00. To compound matters, we are still crawling down the slip road too, but that turns out to be because the traffic lights at the end of them are not phased to cope with large numbers of folks leaving the motorway at eight on a Saturday evening. Once we get past the end of the slip road everything is free flowing, except there is a new problem. The sat nav now wants to take me back onto the motorway. No! This is wrong! Panicing a little I tell me wife I’m going to ignore it, because I know the road I need to take, and once we’re on that road, it’ll recalculate and then go the best way. I make it onto the road we need to be on, and true to word, the sat nav recalculates. It says we are 21 minutes away from our destination. No! It’s now five past eight… This really isn’t good. What’s more, I know that I’ve given the theatre address to the sat nav, and we don’t want to go to that road, we want to go to one that is nearby, where there is a large car park. The two roads are not immediately connected to each other. If I follow the sat nav, I will most likely miss the car park and end up at the wrong place, with no time to spare. I am by now hugely anxious. I know the road I need if I am approaching from the motorway, but not the road I need if I am approaching from the road I am on. I don’t even know the name of the road with the car park on.

I tell myself that I just need to push on, and get to the city centre – I can sort it out when we get to the right area. But I am thwarted again…

After a mile or so, I can see that sat nav is going to send me sharp right at a junction half a mile ahead. That isn’t right! The city centre is dead ahead down this road! So I hit the alternative route button again. It tells me to do a u-turn. What! This is crazy! And then the logic in my head kicks in. Alternative route doesn’t mean take the next most direct route, it means take a scenic route – I’m in no hurry. And whats more, the more you select it, the more scenic is seems to get. There doesn’t seem to be an easy way to reset it back to the most direct route, so I tell it to stop navigating, and then I start from scratch and put the address in once more, all whilst driving. Did I mention it was foggy? Well, yes, it was. I was driving along in fog, fiddling with the sat nav, whitst very anxious, and running very late. Not good. But hey – starting from scratch sorted the sat nav – it now took me on the direct route. And what’s more, the arrival time dropped by five minutes. Phew.

It was nearly eight twenty, when we made it to the city centre. By now, we were following signs for the theatre as well as using the sat nav. Then, in the fog, I missed a turn. Damn. The sat nav suggested we turn right ahead to compensate. I did. More theatre signs. Phew. We carried on a bit further, and then, all of a sudden, I saw the car park we were aiming to park in. Completely by chance we had ended up approaching it from the other side. We parked, and, with five minutes until curtain up, we dashed towards the theatre, which happened to also be five minutes away. When we got there I relaxed a little – there were still plenty of folks pouring in through the door to the foyer. Phew! We both needed to pee. My wife looked dismayed at the queue for the ladies – isn’t it always the way – and I made my way to the gents. Imagine my shock to find it full of women! Not just men dressed as women either – actual women trying to evade the queues for their own toilets. I threw caution to the wind and used the urinal despite the giggling women just a few feet behind me (I thank my kids for this – once you’ve had a three year old girl stare at what you are doing a few times, you can probably pee anywhere).

The bell rang, and folks started to disappear. My wife was still in the queue to get in the toilet door. Anxiety still building. Bah. I hunted out my tickets so I knew where they would be. I checked our seat numbers, and then went to find out which door we’d need to go through. I went and bought a program. The foyer was just about empty now, and the stewards were shouting that the performance was starting. Damn!

After what seemed like an eternity, my wife appeared. I dragged her up the stairs, and we found our seats. We’d missed the opening number, but we were there. I sat there glazed, tense and panicy. We’d not had a chance for a drink, but we had at least made it to our seats.

After a minute or two it became clear that the theatre was very noisey. You expect noise in a Rocky Horror showing – that’s all part of it, but it was especially noisey with chit-chat, far noisier that I remembered it being on my first visit. That was distracting – I found it hard to concentrate on the dialog on the stage. People were whooping and cheering and clapping in all the right places, but I wasn’t. It was just all too much, and the anxiety and tension were not helping. Before I knew it, we were all stood up – another Rocky main-stay – and dancing along. I attempted to move myself in time with the music, but failed. Never mind – I knew if I could just relax a bit, I’d be fine.

As the next few minutes passed, I did start to relax a bit, but the woman in the seat in front was annoying me. She was clearly very dunk, and determined to enjoy herself. That’s not a problem, of course, but she was doing things like throwing her head back in her seat, which was banging into my legs. In my already over-stimulated world, this was a huge distraction.

I did calm down a little and start to feel the show flow through me rather than around me. By the time the Timewarp came around for the first time, I was able to make a little bit of an attempt to join in. Not much - partly because even at the best and most relaxed of time I can’t dance well and look uncoordinated, but also because I’d forgotten the actions. However, I was feeling relaxed enough to try it now.

And then the real problem started. Whilst standing and dancing is all an accepted part of the show, we Brits are also unfailingly polite, and show etiquette dictates that once the dancing is finished, you sit down once more so that everyone can see. Everyone just does it. In lots of ways, it is a joy to see – it just happens in a coordinated manner, from the front towards the back, a row at a time.

But the drunken woman in front of me, and her friend in the seat to her left didn’t sit down. How awkward. I could just about see the action on stage in the gap between the two of them, as long as I kept moving about. How annoying. I didn’t feel annoyed though – it just made me feel more tense once more. After a couple of minutes, some of the women in the row behind me started shouting “Sit down!“. The standing women paid no attention. My anxiety was almost coming out of my ears now – I felt like a conduit for the brewing tension – but still I just sat and tried to see through the gap. By now I couldn’t hear the show any more, it had been drowned out by my internal dialogue, which was asking what I should do. I didn’t know what to do, but thankfully, I had the decision made for me. One of the women in the row behind me tapped me on the shoulder and shouted “can you get her attention so we can get her to sit down!”. As is often the case, once told what to do, I had no problem with the execution. I immediately tapped the standing woman on the shoulder , and as she turned, I shouted “Sit down!” at her. So did half a dozen women in at least one row and possibly two or more behind me.

Her reaction? “No! Fuck off!”. Oh, nice. This acted as some sort of catalyst for me. Instead of feeling anxious now, I suddenly felt very angry. So were the women behind me. The whole area behind me in the theatre were now shouting for the woman to sit down. She ignored them. Her friend didn’t though – she sat down. I stood up and right behind her shouted, with very obvious rage, words to the effect of, “Look – sit down! No one else is standing up! No one behind you can see! We’ve all paid to see the show! Let us see it! SIT DOWN!”. “No! Why the fuck should I?”, she said. The barrage from behind continued, and by now this had been going on for quite a while. Her friends were now asking her to sit down, and she was saying no to them too. Eventually, though, with repeated suggestions from her friends, she did sit down. She then spent the next five minutes talking loudly with her friends, in such a way that I was meant to hear, how pathetic and dumb I was being for asking her to sit down. This typical bullying behaviour has a devastating affect on me at the best of times, but in my current state is was crippling.

Literally crippling. I realised I was grasping both arm rests on the chair. I was stuck fast and tense in my seat. I could barely hear the performance, and I was hugely anxious once more. I was experiencing my strange anxious guilt that happens in situations like this. I know I’m not to blame for this situation, but my body tells me otherwise. The only thing being taken in by my senses were the actions of that woman. Fuelled by alcohol she was bullish, arrogant and aggressive, oh and completely irrational.

When the next stand-up section of the show happened, I didn’t stand immediately. Neither did many around me. Neither did the woman in front of me. She turned to her friends and said clearly, loudly, and with considerable sarcasm that she couldn’t possibly stand up, as it would block the view of those behind. Enraged, I tapped her on the shoulder and said “Look! You can stand up now – no one will mind, BECAUSE LOTS OF OTHER PEOPLE ARE STANDING UP TOO! Just PLEASE sit down when everyone else does, then everyone can see the show they have paid to see!”. She didn’t – she stayed sat down, as if to make a point.

After a couple of minutes she turned round to me and asked what my problem was. She asked why I needed to shout at her, with the confidence of someone who knows she is in the right. Why was I spoiling her show? You know what? I was doing it all because I was selfish. That’s what she said. From her point of view, I was the only person who had a problem with her actions, and it was me being selfish. Shying away from a further confrontation, I shook my head, sighed, and took the fortunate opportunity to stand up and dance that had just presented itself in the show. I didn’t dance of course, I just stood there glazed and anxious, but it did get her out of my face.

She appeared to calm down a bit after this, but spent most of the rest of the first half of the show chatting with her friends, or sulking in her seat when other stood – the sort of behaviour I would expect from my three year old daughter after a telling off. Remarkably, for someone so keen to stand up, she was spending very little time actually watching the show. She did, however leave me alone. The first half of the show went on for another twenty minutes or so, but when I left for the interval I was still very tense, and not really enjoying myself. I chatted a little about it with my wife, over a drink. The drink helped – it took the edge off things. My wife hadn’t heard what had been said between the woman and me, and she said she was glad she hadn’t – she’d said she’d probably have ended up hitting her if she had, and my wife is not a violent woman.

We took advantage of an empty seat to the right of us for the second half of the performance, which meant that I didn’t have to sit behind the drunken woman. Instead, she had an empty seat behind her. She rolled in five minutes late for the second half, and when her friends arrived back five minutes after that, she refused to stand up, which meant her friends took some time getting past her to their seats, leading to extended blocked views for use and others behind. All of this, I am sure was done deliberately and for effect.

But finally, I was able to relax and get into the show. By the end, at the final reprise of Timewarp, I was able to join in and do all the actions without feeling tense or that I was doing it wrong.

It wasn’t the end of the story for the drunken woman though – she decided that she would stand once more, and at various times during the second half of the performance, she once more decided not to sit down when others did, to more angry choruses of “SIT DOWN!” from behind and drunken “NO! FUCK OFF!” responses from her. I was very glad to be out of the firing line.

All in all, it was a very stenuous night for me. The late arrival, the missing of the start of the show, the altercation with an aggressive drunk, and the general loudness of all of it had all taken a large toll on me.

Sunday was filled with a mix of emotions. Flash-backs to the aggression, and to the delayed journey. You’ve seen from my writing here that I remember it all in huge detail. Well, perhaps I’ve needed to write about it here to get it out of my system a bit – to stop that huge detail from playing and replaying in my head time after time.

Did I enjoy it? Well in some ways, yes I did. I like the Rocky Horror Show. I like the music, and I like the themes. It’s fun – even if you are an Aspie. But what was always going to be a difficult night for me was ruined by a stressful journey and the effects of alcohol on someone else. I’m still paying the price today, and that’s no fun.

Post from: That Explains Everything

That Explains Everything is licensed under a Creative Commons Attribution-Non-Commercial 2.0 UK: England & Wales License.

The Timewarp

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Ring-Ring. One…

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

Ring-Ring. Two…

Anxiety is sloshing around.

Ring-Ring. Three…

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

Ring-Ring. Four…

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

Ring-Ring. Five…

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

Ring-Ring. Six…

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

Ring-Ring. Seven…

Come on – where are they?

Ring-Ring. Eight…

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

Ring-Ring. Nine…

I can visualise them running towards the phone now.

Ring-Ring. Ten…

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

Ring-Ring. Eleven…

Maybe this time! Oh – no.

Ring-Ring. Twelve.

Handset  down.

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

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

Post from: That Explains Everything

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One, two, three, four…

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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.

–

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

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

But do you know what?

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

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

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

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

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

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

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

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

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

Maybe we are not so different…

Post from: That Explains Everything

That Explains Everything is licensed under a Creative Commons Attribution-Non-Commercial 2.0 UK: England & Wales License.

Maybe we are not so different…

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