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

End of story.

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

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

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

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

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

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

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

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

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

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

Post from: That Explains Everything

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A different focus

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

Those that did interact with me – well that was a completely different story, and one that perplexed me until very recently. Maybe once or twice a year on average, someone who I was either at school or work with would discover me. They would always make the first move, and start talking to me. Whilst I find group conversation difficult, I have always enjoyed talking one to one with others. I can manage this sort of conversation quite well, and it allows me to feel a connection with others. Over the years I often found myself doing quite a lot of it with young women.

And at this point, expectations and desires started to go in different directions. For their part, the young women found a bright young man that they could get on with. Someone that they found strangely easy to talk to. Someone they could confide in and be themselves with.

Whilst I may have found this too, I invariably found something else. I started to see beauty. Not beauty in the sense that people typically use the term. Some of these women were, of course, conventionally visually beautiful, but the beauty I was seeing was in how they functioned and thought – all of what they were was beautiful. The more I spoke to them, the more beautiful they appeared to be to me, and the more I fell in love with them.

Ah. A hopeless story on many levels. They found an unusual thing – a male friend who they could treat like a female friend. Some of them revelled in this for a while. I found unrequited love, and that ultimately lead to the end of most of these friendships.

You see, whilst I may be unconventional in the way I interact with people due to my lack of social intuition and sometimes even basic social skills, I’m still often engaging to talk to one to one. But whilst I’m clearly a gentle guy that doesn’t use body language that suggests that I’m trying to hit on you, I still feel those typical male urges. Perhaps my definition of attractiveness in a woman is different to my peers, but it is still very much there.

These friendships caused me a great deal of pain over the years. They are nothing, however, to the despair caused by missed opportunities.

There were only a small handful of these, and for the most part, they happened in my early work years, whilst I was single, and living in London. A woman I worked with would take the usual route of striking up a conversation with me, and would find, to her surprise, someone who she really like to talk to. No surprise here for me, of course, it was what I was used to. And then after a month or two, typically after a social evening at a pub, or at a party at someone’s house, it would happen. She’d make a pass at me. I’d miss it. Seriously. My uncertainty and lack of confidence meant that I acted too aloof when suggestions were made that could have lead to intimacy. Nothing intimate ever happened.

Like the time after a house party full of work colleagues, where many of us had decided to hang around until morning. A female friend of mine was in one of the beds, and had recently stripped off, complaining of being too hot. I was at the other end of the room, laying on the chaise longue. We’d been chatting with the female host, but she’d made some excuse to go and chat with someone else, so we were now alone. We were both quite drunk and stoned. My female friend took off her glasses, yawned, stretched and then smiled at me. She made a few little snuggly wriggles under the duvet, and then suggested that instead of shouting across the room, I should come over to the bed to talk with her. She even patted the bit of bed next to her. I didn’t. I stayed where I was – I could hear her just fine. We chatted some more, and eventually, our host rejoined us, and ultimately sleep overtook all of us. I slept on the chaise longue, and they shared the bed.

It wasn’t until the next day, having caught an early tube home, and after I’d caught up on some sleep, and shaken off the hangover, that I started to think over the events of the night before, and what was actually going on. The removal of clothes, the excuses made by our host to leave us alone. She even shut the bedroom door on her way out. The subtle but clear suggestions from my friend. At the time, I missed it all. Did I find my friend attractive? Of course. Could I have shared intimacy with her? Absolutely. If she’d said, “come over here and kiss me,” would I have reacted differently? I suspect so.

To this day, that night frequently haunts me and fills me with deep regret. Right now talking about it is nearly bringing tears to me eyes. How could I have missed what was so obvious?

And then there was the time that a group of us had a night out and agreed to all go back to someone’s flat and go our separate ways in the morning. A female friend from work who had been chatty with me for a few months was there. She confided early on in the evening that there was someone else there who fancied her, and that she couldn’t stand. Could I help her out? There weren’t enough beds for everyone, and the chap she didn’t like had suggested that they share a bed a the end of the night – purely in a platonic way. She wanted to avoid this, she said, and asked if I might share the bed with her. Platonic once more, course – I was such a good friend that she knew she could trust me.

I agreed. She almost immediately made the sleeping arrangements public, and everyone then agreed amongst themselves how the other beds would be shared out so that everyone got a mattress and no-one got the floor. How wonderfully democratic, I thought.

The night passed, and we all ended up back at the flat, drunk and happy. People started to drift off to bed, and my friend went a good half an hour before I did. When she decided to go, she made a point of saying it multiple times, like we’d not heard her the first time. When I decided that it was time for sleep, I crept into the darkened room, and saw her silhouette as she lay facing away from me in what turned out to be a single bed. Oh – I wasn’t expecting that – I’d never asked what size the bed was. I quietly called her to see if she was a awake. She wasn’t. So, taking off my jacket, but keeping the rest of my clothes on, I squeezed under the duvet next to her. It immediately became apparent that she was naked from the waist down, with just a T-shirt on her top half. I lay on my back, not daring to move. Had she forgotten that she said we’d share the bed? Should I go elsewhere? I was drunk. I lay there for what seemed like an eternity, and then eventually fell asleep.

In the morning, I woke, and nursed my hangover. It was a work day, so I needed to get up, and out to work – in the same work clothes (yup, full suit) that I’d been wearing the day before, and that I’d just slept in. I pulled the duvet back, and then went to sit on the edge of the bed. Once more I was reminded that my friend was naked from the waist down, so I gently covered her back up. She stirred, then turned and smiled an uneasy and slightly perplexed hungover smile at me. For days afterwards, my friend kept mentioning what a nice night it had been.

Years of rumination have left me concluding me that this situation was far less clear cut than the other I mentioned, but I do still think that on balance my friend had intended for us to get intimate at bed time. I’d failed to spot her signals, and she had fallen asleep by the time I got to bed. Another beautiful woman, another completely missed set of signals. Another lifetime of haunting regret.

–

If you aren’t autistic, then you’ll probably think that I’m crazy sharing the above with you. It’s very personal stuff, and not the sort of thing that people talk about. Even I know that. If you have an ASD, then I wonder if you also feel I’m crazy, or if you actually understand. I’d be grateful to hear from you.

You see, this is an area of my life that has been greatly influenced by my Asperger’s and how it affects my ability to interact with other people. The stories I relate have swirled around in my head for many years now causing repeated hurt, and I’ve never told anyone about them. I don’t want them to haunt me for the rest of my life, and I’m hoping that by explaining them, I’ll help to exorcise their ghosts from my memory.

Perhaps the saddest thing of all is that  another aspect of my neurological makeup means that I can’t remember the name of the young woman in the first tale. We worked together for at least eighteen months, and were close for several months, albeit without any intimacy. Whatever your name was, beautiful woman, I’m sorry.

Post from: That Explains Everything

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Relationships with women and tales of regret

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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…

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Maybe we are not so different…

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

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

Left Brain Right Brain describes itself as an autism blog. It presents itself as an autism news and comment site, often digging out little-seen articles and research from elsewhere on the Internet. I’ve been following it for a while, occasionally dipping into some articles in more depth. The articles are usually well written and thought provoking. In short, I rather like it.

So when, on Wednesday last week, a new article entitled Truth and Consequences – The Anti-Vaccination Movement Exacts a Price appeared, I was intrigued enough to read. What I read made me squirm, and feel very sorry for the mother and child that the article was about. With my newly made decision to comment more in the autism community, I set about replying. You can see what I wrote about six or so comments down. It is very me.

Perhaps I should have paid more attention to most of the comments above mine before I did so, as it turns out that they very much set the tone of what would happen to the thread of comments on the article.

As it happens, I didn’t check in again until the next morning. Suddenly there were a total of 198 comments. Goodness! I wasn’t expecting that. I started to read them, and found myself getting more and more drawn into the arguments and counter arguments that were being made. You see, the comment thread had got hijacked by two very different sorts of autism activists – those that feel that autism is a problem caused by vaccines and who also think that a regime of often questionable drugs and therapies (often referred to as biomed) can cure it; and those who think that the curebies are deluded, stupid and damaging their kids.

As I read, I felt my head swimming, and panic rising in me, but I couldn’t quite put a finger on why. When I reached the end, I wrote another comment saying how sad I felt about it all, but it didn’t hit the mark with me, or, frankly, with those commenters from both camps who were foaming at the mouth about each other. I felt awful – very down and agitated, and the feeling lasted for several days. My wife questioned what my problem was, and I explained about the article and its comments. She read it all herself and didn’t understand why I was so down about it – after all, the negativity wasn’t aimed at me. I didn’t understand it either, but it really had affected me badly.

It has taken a few days of contemplation to get over the feelings the comments stirred in me, and to really understand why this lively debate had such a debilitating effect. In the end, I’ve realised that this is interwoven with some things that I’ve written about before.

If you can tell me a good story, make it sound plausible, and put passion into it, then I will believe it. Let me see both sides of an argument, and I will empathise with both, and will end up sitting on the fence as I can’t determine which I agree with more.

You may call it naivety, or gullibility, and maybe it is. Whatever it is, it is an intrinsic part of me, and I can’t escape it. Apply this to the comment war in the LBRB article, and maybe you can start to see my problem.

Much of the time, I would read a comment from one camp, and think that it made sense. I’d then read a rebuttal from the other camp, and see how that too made sense, and overrode the original comment.  After a great many – no – a huge number of rounds of this, I was left feeling thoroughly perplexed. Everything and nothing made sense any more, and I felt completely panicked by it.

I come from a science background, so you’d think I’d plump for the side that were denouncing those who tried to cure their children of autism, wouldn’t you? Well clearly, my natural leanings are in this direction – I don’t think autism is caused by vaccines, or via an overloaded immune system. I don’t believe that you can cure autism either – I think it is a genetic difference.

However, faced with a mother who has an autistic child with some other medical symptoms that I coincidentally also have – such as a frequently bloated stomach, or frequent fungal infections – and I can’t help but take notice. When she talks about these being part of her son’s autism, and various biomedical treatments that have improved these conditions in her son, I start to get drawn in, and wonder if she might just be right. She is telling a good story. As usual, I see the minutae of the detail she talks about, and completely miss the bigger picture. So what if her son’s bloated stomach is better – who, other than she, actually said that a bloated stomach was a sign of autism…? If only I could have seen that kind of issue at the time – but I didn’t.

The comments completely overloaded me, and left me confused as to which was was up and which way down as regards autism. I could see how everything that everyone on both sides of the argument was saying made sense. And yet I knew that wasn’t – couldn’t be – right. I felt completely lost – like I no-longer understood myself or my place in the world. All from a couple of hundred comments arguing with each other.

So now I can see why I’ve been steering a wide berth from the advocacy sites over this last year. It isn’t the arguing that’s the problem, it’s my ability to see everyone’s point of view as being equally valid, and to then miss the bigger picture that tells me where I really should place my allegiances. I’m just no good at that side of things, and falling into the trap breeds fear and anxiety in me.

I am going to keep opening up this blog, just as I intended to do a week ago, but I’ve decided not to jump in and comment on any more advocacy blogs for the time being. Besides, I have enough on my plate just writing here, replying to comments, and commenting on a few other blogs.

Do you experience any issues such as this? I’d love to hear from you if you do.

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Sitting on the advocacy fence

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

These assertions are partly borne out by the fact that I’m a well educated middle class man, and I didn’t know what Asperger’s was and indeed my knowledge of autism was framed much as I stated above until such time as it was suggested that I was on the Autism Spectrum. A spectrum? Goodness – that was a new idea to me. When I went to see my doctor last week, she said, “So of course, autism is really a spectrum, with different degrees of affectedness…” as though this was something new to her too.

This lack of knowledge makes my job of just how much to tell people about my autism quite a challenge. I’m aware that a great many people will start with the stance that I can’t possibly have autism, because, well, I’m actually talking to them, and autistic people don’t do that, do they?

But do you know what? I’d much rather have this challenge, than the one that I perceive people in the US have.

In the US, various groups lobby for their view of autism to become the accepted norm. They have a lot of power, a lot of money, and are often backed by famous individuals to lend them that extra bit of trust in the eyes of those who listen to their messages. They release expensively produced videos that are carefully crafted to further their cause.

The problem for me with all this is that the message they are sending is not actually based on the reality of autism.

I can’t imagine what it must be like being a freshly diagnosed adult with autism trying to explain themselves in the US.  As well as general ignorance towards the specifics of what autism really means, you are going to be faced with people who think they know all about autism, because they’ve seen one of the lobbying videos from these groups.

All of a sudden, you are going to be talking to someone who has just associated very negative things with you, based on something a celebrity told them on TV – so it must be true. You may be viewed as being a home wrecker, or incapable of feeling empathy for others. You will likely be seen as damaged, and you may be asked how your treatments towards a cure are going. In short, you may well be seen as being a worthless person.

A particularly nasty vision of this negative propaganda was released this week by Autism Speaks. You can see the video here, on YouTube. Words fail me as to how truly despicable this video is. Various other places on the Internet have noted how, if you mute the sound and watch the video, you only see happy and contended autistic kids and adults. Add the commentary, and well, it turns into something completely different. It upsets me, and it’s just plain awful. Period.

Autism Speaks does not speak for me.

I’m very happy to report, however, that this morning I saw another video. One that helps to redress the balance. Rethinkingautism.com does not, I am sure, have the same political clout or lobbying ability as Autism Speaks, but they have produced a wonderful video to counter the likes of Autism Speaks. I encourage you to watch it – here on YouTube. If only this was the message that was being given the really hard sell in the US…

Coming out to the world as autistic is never going to be easy, regardless of where you live. But I’d rather that the population knew nothing about autism than they were being fed very slick misinformation from a well-oiled political propaganda machine.

What would be really wonderful was  if autism was as well understood and tolerated  in the population at large as, say, cancer is. The irony of this statement is of course that cancer isn’t really well understood by people, but people generally do know enough about it to understand how it impacts people, and to empathise. And that’s really what autism needs too.

Maybe one day…

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Awareness versus propaganda

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

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

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

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

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

Do you suffer from earworms?

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The mighty earworm

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

Let me explain what it feels like:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Blurry-eyed boy

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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.

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Diagnosis

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