Maybe we are not so different…

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

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

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

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

Yesterday morning, I emailed the information email address of a private counselling clinic in Sheffield, near to where I live. The clinic offer a Developmental Disorder Assessment for those who suspect they have an Autism Spectrum Disorder. The man behind both the clinic and  assessment is a very well respected psychotherapist and professor, which ultimately helped give me the confidence to write.

I was concerned as to whether a GPs referral was strictly necessary, so in addition to giving a short(ish) background about myself, I stated my concerns and asked I what needed to do to get the ball rolling. As I was emailing a generic address at the clinic, I didn’t get my hopes up of a quick reply, but to my immense surprise some forty minutes later, a reply was sitting in my email inbox, not from the clinic administrator, but from the good professor himself.

A GP referral was necessary, and perhaps for the first time, I appreciated why. A diagnosis doesn’t necessarily come unaccompanied. There may be recommendations for further treatments to feed back to my doctor following the assessment.

So, after lunch, I phoned my GPs surgery and asked for an appointment. Here, things didn’t go to plan. My usual GP, it seems, has retired. Oh. Thinking on my feet, I realised it just meant that I’d need to explain a little bit more history. An appointment was offered, with a woman doctor that I’ve not met before. For the next morning. I wasn’t expecting that – next day appointments are usually like gold dust, and a wait of several business days is not at all uncommon. I was a bit phased by this, and accepted the morning slot. I booked a double appointment, just to be sure that I’d have time to explain myself, without feeling rushed.

It was only after I was off the phone that it hit me that I was going to go and ask for a diagnosis the following morning. All of a sudden I was filled with doubt and thoughts of cancelling – after all, I wouldn’t have the time to prepare what I was going to say, and to print out supporting documentation. My wife came to the rescue. She told me that I didn’t need any supporting notes and that I knew what I was talking about. I’d be fine. I knew she was right. It’s how I tend to approach job interviews – I don’t prepare as fully as I might, instead relying on an ability to pull the knowledge I need out of my head when asked.

I slept well. Amazingly.

This morning, as the minutes passed, I grew more and more nervous and anxious. My mind was full of questions and of trying out answers. I made it to the surgery ten minutes early and then sat and tried to calm myself. I remembered the seven-eleven breathing technique I’d been taught when I went for counselling to help my anxiety. It didn’t feel to be helping at the time, but I’m sure it did in reality.

Whilst I was waiting, the doctor appeared in the waiting room, and grumpily called someone. Uh oh. That didn’t sound good. I tried to calm myself with the observation that the doctor had rung her intercom bell to alert the receptionist that she should send in the next patient, but that the receptionist hadn’t responded. Just maybe that was why the doctor was grumpy – she’d had to come and find her next patient herself.

All of a sudden it was my turn. I wandered dazed down the corridor containing the consulting rooms, and at first I couldn’t find the right room. It turns out that they are numbered in a strange order, and after a short false start I found the door I was looking for.

The next twenty minutes passed in something of a blur.

In short, the doctor was sympathetic and listened carefully both to my concerns and to the descriptions I gave of some of the ways in which AS affects me. After about fifteen minutes, she made it clear she wa happy to refer me for a diagnosis, but at this point she stumbled at little. She realised that she had no idea where she could refer me to. This was my cue to chip in and say that I’d found a clinic in Sheffield, which went down well. She then wondered out loud if the clinicians did NHS work, and explained that they could put a case forward for me to be seen on the NHS out of area, if the clinic or those working there undertook NHS work. I explained that I was fully prepared to meet the cost of the consultation privately, and thus the NHS and special cases wouldn’t be needed – so long as she was happy to do the referral. She agreed – she’d write to the clinic to refer me early next week.

I let out a very audible sigh of relief, and felt close to tears. The doctor smiled.

I realised that in many ways I’d been working towards this moment for a year. If you count the time I spent understanding my anxiety then the road to here has been more like two years.  To be sitting with a doctor who has just said that she understands how Asperger’s affects me and is happy to refer me to get a formal diagnosis was just wonderful.

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This, of course isn’t the end of the story, by any means. It is the start of a new chapter.

Assuming the diagnosis goes the way I expect, there will be a whole new set of realities and challenges for me to face. The doctor mentioned the possibility of more counselling, perhaps as a couple with my wife, and maybe to help with my parenting skills too. There will also be that small matter of having a disability on my medical record to face up to and deal with, and the devising of strategies of when and if I need to let people know.

Of course there is still that tiny little doubt in the back of my mind that the diagnosis will not return what I’m expecting. That too would take time to re-adjust from. I’d be fibbing if I said that it didn’t worry me just a little.

Overall though, I’m feeling very positive about the whole experience and about what the future holds. A large part of this huge weight I’ve been carrying feels to have gone.

A different sensory overload

Here’s an interesting one.

One day last week, I wrote a couple of articles for this blog. They were quite long and intense, and I ended up with nearly 2000 words bashed out in a little over an hour. I felt great. I usually do after writing a blog post. The physical act of typing words out de-clutters my brain and forms logical sentences of the thought fragments that swirl around in my head.

My euphoria didn’t last long though. By the time I got home from work I felt very overloaded, and the evening passed in something of a haze. The next morning, I felt hungover.

I’ve talked about each of these states recently, and have put the cause down to sensory overload – specifically too muich sensory input. But that day, I didn’t have too much sensory input.

Now, it’s probably wise to remember that I ’see’ much of what I write. Both my long-term and working memories are very visual. So, in writing about how I feel about the diagnosis of Asperger’s, and how I frequently say one thing to people, and then don’t follow through with the actions, I spent a good deal of time playing and replaying scenarios in my head. Visually. I can kind of ‘hear’ the other people talking in these scenarios too.

Could it be that the intensity of generating and seeing all this information in my head and the act of getting it all down in writing caused much the same effect as too much visual, auditory or tactile input does? I can’t be sure, of course, but that is the best conclusion that I can reach. It’s not too much sensory output, as such, yet it is about experiencing a lot of sensory information, albeit internally generated.

A different form of sensory overload.

What do you think?

Diagnosis

Books make a big thing about getting diagnosed. If you believe what you read, then getting a diagnosis for an Autism Spectrum Disorder is a very important and positive step.

Is this true? The books are almost invariably written by people without autism, so why would they be such a great expert on this?

I’m a little troubled, and I’m going through a round of self-questioning on the topic.

Should I get a formal diagnosis? Should I go and see my GP and try to obtain a diagnosis that way, or should I see someone privately? What would a diagnosis mean for my work? Would it change my relationship with my employer? Would it change the relationship with my wife? How about with other people I know? If any of my relationships were changed by a diagnosis would that be a force for good or not?

There are a lot of questions that the books don’t answer. Indeed, the AS books I’ve read don’t really tackle questions like the above much at all, which is a shame because ultimately those of us wondering about diagnosis need to know the answers to questions like these in order to make a rational decision.

What do I think?

My thoughts all boil down to one statement, which makes it difficult for me to choose a path forward:

Autism is poorly understood in the UK.

Various articles I’ve read on the Internet over the course of the last year (sorry, no specific references for you) suggest that getting a diagnosis here in the UK via the NHS (National Health Service) and your GP (family doctor) isn’t easy. I’ve read of people being told not to be so ridiculous or being asked why on earth they would want to get diagnosed in the first place. This really does highlight just how far behind some other countries the general level of understanding surrounding the Autism Spectrum is here in the UK. If some GPs believe that you can’t possibly have Asperger’s simply because you managed to turn up at their surgery and ask for a diagnosis, then we have a very long way to go on the education front.

If I choose the NHS route, then I have to go to my GP’s surgery extremely well armed, and prepared for a fight. I also need to consider whether a formal NHS diagnosis would serve me best. If I choose the NHS route, then my permanent health record will forever more state that I have Asperger’s. I will be formally classed as disabled in the eyes of the state, and I will have to mention the condition when I go for new jobs, or apply for insurance. I’d even have to notify the DVLA (driver’s registration agency) about it.

Ah yes – jobs. If some doctors seem to have a lack of understanding of Asperger’s, how can I expect employers to view a diagnosis?

For reasons that I can’t really go into, telling my current employer could potentially lose me my job. It probably wouldn’t, mind you, but I wouldn’t be surprised if it led to me being told not to report for work, followed by a battery of tests before a decision was made as to whether I could return to work or not. This may sound draconian, but my current job requires a considerable amount of vetting (with good reason) for everyone that does it. I’ve already had to have my depression in recent years considered, with a statement collected from my family doctor to support my case.

Here in the UK we have laws that intend to prevent job discrimination against people with disabilities. This is a good thing, and I’m sure it has led to a great many people with disabilities getting more fulfilling jobs. But there are, of course ways around laws like this. Consider this:

After a series of interviews, a company narrows down potential job applicants to two. Both interviewed well, and both could do the job well. The employer knows that one of them has Asperger’s, and having read up on the condition, understands that it affects the applicant in a number of ways, including their ability to interact with colleagues and sometimes their ability to produce work under stress. Would you blame the employer for not choosing the candidate with Asperger’s? I wouldn’t. The employer would be well within their rights to take the candidate without Asperger’s, despite employment laws. If the Asperger’s candidate was clearly the best for the role, well that’s a different and tricky matter…

I could, of course decide not to tell any potential new employer that I have a disability. My Asperger’s brain can see the attraction of this, but doesn’t like it one bit. Not telling would be fibbing, and that ultimately gets you into trouble, doesn’t it? In my view, any employer of mine has a legitimate right to know about any illness or other condition that might adversely impact my work. That’s fair. Not telling them really does feel like starting off the working relationship on completely the wrong foot.

Interestingly, my current state of knowing but not having a formal diagnosis sits a lot easier on my shoulders. I don’t feel like I have to tell anyone – like in some way not having a formal diagnosis means that I don’t have the condition. Except of course that I know beyond all reasonable doubt that I do have AS – I’m just missing the piece of paper from someone qualified to make a judgement to confirm it. The hypocrite in me makes an appearance once more.

If an NHS-funded diagnosis would lead to a formal record of disability and a responsibility to tell employers, what would happen if I went for a private diagnosis?

I’d get a piece of paper telling me what I already knew. What I then did with this piece of paper would be completely up to me. I wouldn’t have to tell my GP about it, and hence it wouldn’t have to go on my health record. Would I need to tell my employer? A difficult question, and one that I’m not sure I have a good answer for right now.

My wife’s view regarding my AS and diagnosis is one of worry. Over the last year we have talked about AS and what it means for me (and us) a fair bit. As my understanding of how it affects me has improved, so in time has hers. Being the partner of someone with AS must be difficult. It must be hard to conceive how the person can appear on the surface to be so normal, yet inside they are quite different.

My wife worries that my pursuit – with or without formal diagnosis – of AS will lead me to ‘giving up’. What she means by this is that she worries that I’ll stop acting ‘normal’ – that in some way learning about AS will change my ability to interact with the world. This feels very alien and illogical to me, yet I’ve read very similar accounts of these worries elsewhere, so I take it to be a quite normal neurotypical point of view.

I think, perhaps, that my wife is starting to see just how much of my presentation to the world is an act. Will I stop acting just because I now understand that it is an act? No. Will there be times that I choose not to act to the degree that I have done in the past? Perhaps – and I don’t see that as a negative thing. Learning about and embracing AS is teaching me that it is OK to be who I really am. I don’t have to act like someone that I’m not if I don’t want to – and yes, that is most likely the sort of phrase that scares my wife. But you know what? I do still want to interact with the world, and so I still act. If I didn’t put on my act, I’d have trouble interacting with anyone other than those that know me very well. I’d also have to spend an inordinate amount of time explaining to everyone I met that I was unusual because I had AS, and that no, it was nothing for them to be worried about. I don’t want to live my life like that, so whilst I may choose on occasion to drop my act and just be me, that will be the exception, rather than the norm.

If I’m not going to drop my act around people I know, would I need to tell them I was formally diagnosed with Asperger’s? Perhaps not. Would I feel uncomfortable if they didn’t know? Maybe yes. As I wrote above, though, telling people may be a lot of work for very little gain, and I’m not sure I want to entertain that.

Would I like people to know? Yes. And no.

I would dearly love people to understand that I was autistic and to make little allowances here and there for me to make my life easier. I’d love to be in a position where I could act a little less around people other than those closest to me. I fear the reality of that situation is a long way off. People in the UK simply don’t understand autism right now, and are often naturally suspicious of a condition that they can’t immediately see. I suspect that opening up to people would cause me considerable pain due to unexpected and sometimes negative reactions.

So where does this leave me? Without a definitive answer as to whether a diagnosis is a good idea or not.

A formal NHS diagnosis would buy me some peace with the world, but it wouldn’t make the world treat me any better. Indeed, it could potentially cost me my job, and make it more difficult for me to get a new one. It could cause alienation with people that don’t understand autism or who can’t buy into a condition that they can’t immediately see. Would the less-formal private diagnosis buy me as much peace but without the other side effects? I doubt it.

Yet there is something about obtaining a formal diagnosis that is about negotiating peace with the world. I’ve not fitted in thus far in life, but now I know why. Getting a piece of paper with that diagnosis on may be me formally saying that I accept that I know why I have never fitted in. Obtaining that peace holds a huge amount of attraction to me.

It feels like there is no middle ground here – either you go the whole distance, getting formally diagnosed, being open with everyone about it and accepting the consequences of that, or you don’t pursue diagnosis at all.

It feels like I’m being urged to jump off a cliff on the understanding that I’ll be able to fly. I want so very much to be able to fly that I almost believe what I’m being told.

I want so much to go to my GP and ask him for a formal diagnosis.

But I haven’t made an appointment.

Maybe that says it all.

I would love to hear your thoughts on this tricky subject.

Where is everyone?

I don’t know if you’ve noticed – I certainly have – most of those who contribute to the debate here are female. More than that, almost all of the blogs that I read regarding ASDs are written by women. This isn’t me being selective, indeed I’d dearly love to hear more about AS from a male point of view.

There are a few notable exceptions - Gavin’s blog springs immediately to mind, but I don’t think I’m overstating things to say that most ASD bloggers are female.

There is of course absolutely nothing wrong with this, but I do find it odd. After all, one of those universal ‘facts’ that goes round and round is that four times as many males have ASDs as females. This may of course not be entirely reliable, but even if the real figure is a 50/50 split, you can’t escape the fact that there are precious few male ASD bloggers.

If you have trouble expressing your feelings and emotions verbally with others, as a great many of us with ASDs, both male and female find, then writing can be a wonderfully liberating release. The Internet provides a freely available, easy to use medium for people like me to express themselves in writing, and what’s more, if you persist at it, people will give you their own thoughts back. This is great – so where is everyone? And just where are all the male ASD bloggers?

If I looked hard I’d probably find a few hundred ASD blogs out there. If I tried really hard, spent a long time on search engines, and looked at forum sites like wrongplanet.net maybe I’d be able to push the number of people with ASDs who regularly write about it to a few thousand, but I doubt I’d get the figure much higher than this.

That really isn’t many, and is a tiny fraction of those who have been diagnosed.

Why?

This really makes no sense to me. Am I missing something? Anyone got any ideas?

Oh, and if you can find me the missing male ASD bloggers, I’d be very grateful!

Better to know?

If you’ve been reading this blog for a while, you’ll know that I discovered my Asperger’s  in the autumn of 2008, when I was thirty five years old.

Until that point in my life, I’d been plagued with feeling different from everyone else, getting into many scrapes of my own making that I didn’t see coming, and generally living in a high stress mode all of the time.

My discovery of Asperger’s, and my subsequent matching of its characteristics to my own personality was my real That Explains Everything moment.

I frequently wonder how my life might have been different if I was growing up today, with the reasonable chance that my differences might have been identified and diagnosed when I was still in childhood. Would my life have been easier or harder?

Let’s look at how it has been for me first:

My life has been lived under the almost constant feeling of high stress. As life has progressed and got correspondingly more complex, so my background stress level has increased. Tasks that a typical person would find to be not stressful at all – such as making a phone call – add intense peaks to my daily stress. Backing up my stress is anxiety. I’ve experienced this since at least my early teens, and it comes and goes in waves. This week I have it quite badly, but last week I was mostly fine. When bad, the anxiety can be crippling. A combination of it and the stress often leave me feeling dumbfounded just by regular life. I sit like a rabbit in the headlights of life, existing, but not really knowing what to do or how to behave.

You need to understand, however, that until a year or so ago, this felt normal for me. Whilst I knew that I was a little different in some way to most other people that I interacted with, I didn’t appreciate just how different I was. So, stress and anxiety felt normal – it’s all part of every day life for everyone. Isn’t it?

Life at work has always been a mixture of success and failure for me. When well guided, I work better than your average person, tend to get on with things without a fuss, and I’ve been well liked by various people that I’ve worked for for these reasons. When I work in a disorganised place, or for bosses who are underhand then I fare far less well. I’ve never been fired, but I’ve come close, and I’ve upset senior people at several companies with what I can now see were inappropriate outbursts. The problem is that I didn’t see them like this at the time. I’ve never seen the potential consequences of my whistle-blower-like activities in companies. I’m speaking the truth – what’s wrong with that? Bad times at companies also increase my stress and anxiety. So it goes.

In my personal life, I’ve been a serial monogamist. Without realising it, I’ve always dated women who could help take control of the areas of my life that I wasn’t very good at.

When I was younger, I held on for dear life to the romantic relationships that I had, and was desolate when they broke up. As I’ve matured (perhaps rather more slowly than a typical person would), I’ve become far more accepting of my responsibilities in relationships, and what I can realistically expect from my partner.

My dating methods have been unusual. When I was younger, it was always the girl that asked me out. I have always been sweet natured and queit and kind (although perhaps in an unusual way). I met my wife via an introduction from a friend and we text messaged first, before graduating to phone calls and then meeting. This took a huge effort on my part – effort that I assumed most other people had to use too to find a suitable partner. Without that introduction, there is a good chance, I think, that I’d still be single now, seven years later. I’ve never gone looking for love in bars, or using other typical methods that people use to meet other people.

I’m thirty six. I went to university, I have a wife, two kids, a house, two cars, and a job. I have a great deal to be thankful for.

How my life would have progressed if I’d been diagnosed with AS as, say, a young teenager:

Well for a starter, I doubt I’d have gone to university. University was expected of me, and hence I went. I didn’t enjoy it, as I failed miserably to make friends, and got though it only with the substantial help of a long term girlfriend.

I’d have decided that university wasn’t for me. So. No degree.

That would have meant that I wouldn’t have joined the graduate recruitment program of a large UK IT company, nor moved to London.

What would I have done for work? I really don’t know. I fell into the computing course at university more out of luck rather than good judgement. I toyed with chemical engineering and architecture first. IT suites me – but would I have seen that if I had been diagnosed with AS at a young age?

I suspect I’d have got a low paid, low status job – maybe a librarian or somesuch. Perhaps my work would have consisted of lots of reasonable short jobs.

I’d be stuck at home with my parents well into adulthood, because I doubt very much that I would have had the confidence to move out. After all – I’d been diagnosed with this big scary condition that made me vulnerable and easily led. My parents wouldn’t have wanted me striking out on my own in that condition, I suspect.

Relationships? I doubt there would have been many, if at all. A man in his twenties, living at home, with no friends, who perhaps doesn’t have a job, and who doesn’t socialise is going to find it difficult to find love. That isn’t rocket science.

And now, at thirty six, where would I be?

My best guess is that I would be living in a rented flat, with no career, and possibly not much regular work. I’d have made a few friends in the autism community, but I wouldn’t be married, and I’d probably have been single for many years. I’d be anxious and depressed, and frankly quite downtrodden and pissed off with the hand that life has dealt me. I would most likely get about by bus, having never learned to drive.

Frightening, isn’t it?

Life has been hard work to get to here, but it felt normal, because I had no expectations that there was really anything fundamentally out of the ordinary with me. I was different yes, but not that different. I got on with life, because that what you do – that’s what everyone does. I had expectations of living an ordinary life, and that’s what I set out to do, and ultimately did.

I genuinely believe that my life expectations, if diagnosed at an early age with AS would be very different. Everyone’s expectations of me would have been far lower, as would my own expectations. Even independent living would be a serious and hard to achieve goal. Life would be a struggle in a very different way to the way in which I’ve found it a struggle in reality.

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The reason behind my thinking about all of this is perhaps not obvious, but has been knawing at me for a little while.

At times I see some of my AS-like traits in my own children. They are five and three right now. Would I wish them to undergo a diagnosis if it started to become clear that they fitted an ASD profile? It’s a difficult moral question to answer.

Based on how I think my life might have been different, can you guess which way I’m leaning on this right now, should it become an issue?

A bigger quotient

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

Hi James,

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

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

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

The test is on page 18-21.

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

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

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

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

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

I scored 43.

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

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

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

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

Opening up: A stressful couple of weeks

I’m sure you know how it goes. You don’t find a release for your frustrations, and they very quickly build up, giving you an uncomfortable dose of anxiety.

Well, that’s certainly what has been been happening with me these last couple of weeks.

There are a number of things at play. Firstly, I’ve decided that the time is right to let my parents know about my Asperger’s. Secondly, work has, for one reason or another proven to be quite stressful over the last couple of weeks. Thirdly, I’ve not been writing here.

Why have I not been writing? Well initially it was just the way that the dice rolled – it was a long bank holiday weekend here in the UK, and I rarely write outside of work, through habit rather than anything else. I’ve also been quite busy at work, and also busy with point number one this week, and so didn’t write on Tuesday either. I then decided that maybe it would be nice to take a little break from writing for the rest of the week, to recharge my batteries as it were. This, it would seem has turned out to be a mistake, but perhaps only because of points one and two above also being on the go.

So – I told my parents I has AS. In many ways, the direction of this blog has been working towards this since I set it up. I needed to get my own head straight about AS before I could tell others, and in particular my parents. That’s because I’ve always known I would have a hard job selling my self-diagnosis to them, and in particular to my mother.

And I was right. I send a long but well considered and tweaked email to my parents at the start of last week. It barely scratched the surface of AS and me – how could it? AS is a big and all encompassing condition, and I’d need to write a book (or a blog!) to capture it all. A couple of days later I got an emailed response, that spent some time trying to point out how various aspects of my life meant that I couldn’t possibly have AS, as someone with AS wouldn’t have been able to achieve what I’d achieved, or wouldn’t have acted as I did. To cap it all, my mother flat outright rejected in writing that I had AS, after two whole days of consideration.

I was disappointed, but not at all surprised. This was the sort of thing I expected. Instead of a considered response that this was all a bit of a surprise, and that they didn’t really know enough to form an opinion, I got a flat rejection. I couldn’t possibly have AS, and I shouldn’t be so silly as to suggest it.

I wrote an angry email back, that argued that a snap judgment based on a couple of days of research and a small amount of background knowledge formed over the years that my mother served as a teacher (she retired seven years ago) was simply not valid, and further more was extremely insensitive. I’ve since followed this up with a series of emails that point out how the examples she gave of why I couldn’t possibly have AS actually missed a huge amount of subtlety in the situations that did show underlieing AS; or in some cases how the judgments were just plain wrong. I’ve not had responses to these as yet, as my parents disappeared abroad on holiday at the end of last week, and won’t be reading the correspondence until today at the earliest.

Despite the fact that I was expecting this sort of response, and was well prepared, I still felt as though the whole experience was a kick in the teeth. My stress levels are correspondingly up, as is my anxiety, and it took a few days from the first response for me to recover my composure and confidence enough to put up a well thought out and thorough rebuttal to my mother’s dismissals.

So when you add work stress to all of the above, it hasn’t been a great week. There are various mind games going on at work, with individuals such as myself, who are contract rather than permanent staff being subject to veiled threats regarding the stability of our jobs. It’s not much fun.

In hindsight, I picked a bad week to decide to open up to my parents, but I wasn’t to know that the work stress would start. It’s also been a bad week to decide not to write much here, as bottling up my thoughts has just lead to further stress and the associated anxiety.

So today has been different. I have worked hard to clear my to-do list of the most important work related tasks, and have cleared a half hour of schedule to write this, so I can get some of it off my shoulders. It feels good.

The next week or two are clearly going to be difficult, but I hope that a bit of time and patience on my part will allow my parents, and my mother in particular to accept that I do have AS.

Time will tell. Wish me luck.

Misguided lobbying

Perhaps I’ve been deliberately avoiding it, albeit subconsciously.

Perhaps it’s just something of a fluke.

Whatever lies behind it, it’s fair to say that I’ve never read the various sites on the web that advocate that Autism is a curable disease, and that vaccines cause autism.

That’s changed today, and has proven to be something of an eye opener. At the tail end of last week, I supplemented my Google Reader list with some custom streams from Google News, gathered from some ASD-related search terms. This threw a number of pages at me this morning, some of which were on websites I’d not seen before.

I’m not going to name them, because I’m a strong believer in free speech, and they are entitled to their opinion. I have to say, though, that what I read horrified me.

My own investigations of my Asperger’s have lead to something of an inevitable conclusion – that Autism Spectrum Disorders are genetic, and that they flow through families. I say inevitable, because I can see signs of other family members having ASDs. In addition, my different ways of thinking are so deeply ingrained and natural to me that I can’t believe that they are purely a learnt behaviour, nor the effects of some vaccine gone wrong.

Living in the UK, it is impossible to have escaped the Vaccines cause Autism debate over the last few years. Indeed, in the years before my own discovery of AS, my wife and I chose to have our son vaccinated privately so that he could have separate Measles, Mumps and Rubella jabs. I’d researched what little there was of the pros and cons online, and personally didn’t believe in the suggested link; but my wife did, and I was happy to do what was needed to put her mind at ease.

In the years since then, it seems that a whole industry of new sites has been born which are far more organised and more professionally run that the information that used to be available. The sites I saw today argued very strongly that both MMR and other vaccines were behind autism, and that we were on the verge of an epidemic of autism that was caused by the vaccines.

Wow. These websites appear to be thinly disguised lobbying tools. The apparently well-meaning adults who write for the sites appear to predominantly be parents of children who have been diagnosed with ASDs. They feel that their viewpoint – that vaccines caused the autism in their children – is right, and they passionately want to change the world view. They are on a crusade.

Well, the purpose of my site has never been one of lobbying nor a crusade to change anyone’s mind. I present the facts as I see them – just as their sites do – but I hope that those who visit mine will make up their own mind. I speak as someone who is affected by Autism, not as a well meaning, but neuro-typical adult. I seek the understanding of others. I don’t want to change the world, and I certainly don’t want the websites I’ve seen today to claim to be speaking for me.

Incidentally, as a parent, I find it very easy to see how you could think that vaccines cause autism – I really can.

After all, vaccines are given to children at around the age where symptoms of ASDs often start to show.

Every child develops in different areas at different speeds. My son, who is now five, has always been great at motor skills, such as riding a bike without stabilisers before his fourth birthday, but got his colours wrong until very recently. My daughter, who has just turned three had already got colours mostly sussed, uses a broader vocabulary than her brother did at the same age, but is less good at the motor skills. This is normal. My daughter has the occasional toileting accident, despite having been potty trained during the day for well over six months. Again, this is normal. I think you have to look at the big picture. Both of my kids are coming on in leaps and bounds.

But could I see this when they were a year old? If you really think about it, it’s only at that sort of age that children really start to communicate with you in any way that isn’t smiles or crying. They’d learned to sit up and crawl, sure. They also made repetitive single syllable sounds. But beyond that? It’s much more difficult to see real progress. So I personally find it difficult to see how someone can really see regression in a one-year old, who has just had the MMR jab.

If you were brought up without the strong grounding in science and logic that I have, it is easy to turn better detection of autism disorders into an epidemic that doesn’t exist. After all, when I was growing up, there was no diagnosis of Asperger’s Syndrome. School teachers weren’t on the look out for kids that had ASDs – indeed the autism label was really just applied to kids on the very profoundly affected end of the range.

That doesn’t mean that it didn’t exist though. I had Aspeger’s when I was a dazed seven year old at school wondering why everything was so confusing. I had it when I was born. But I wasn’t one of the Autism statistics in those days. And guess what? I’m still not. I don’t have a formal diagnosis, yet I still have Asperger’s.

Like me, many tens of thousands of adults are realising they have an ASD every year. Not because they have been vaccinated then developed a condition, but because they’ve always known they have something different about them, and they are now empowered to find out what it is due to the wonders of the Internet and books that have been published. These are not new cases of Autism. These people have always had it.

It is also absolutely true to say that more children are being diagnosed with autism than ever before, but logic says that anything other than this would be absurd. Far more is known about autism now than even fifteen years ago, so more and more of those like me, who would have slipped through the net when I was a child are now being diagnosed at a young age.

An autism epidemic? Give me a break. It’s just more comprehensive diagnosis.

What I’ve read today has shocked me. These people seem determined to persuade the world to adopt a misguided view of Autism disorders. What’s more they seem to be sending a message that vaccines in general are bad, which is likely to lead to more deaths of children in the long term, as measles makes an unwelcome return.

And what about their poor children? Instead of being accepted for who they are, it would seem that they become part of a freak show, with the drug companies as the bad guys. Asperger’s isn’t a terrible thing to have – it just means you are different from the norm. I remember how I felt growing up. I can’t imagine what it must be like to grow up like that but to think that your differences were caused by an injection you had when you were a year old. How depressing – you will forever think that you could have been ‘normal’ if it wasn’t for that injection, and you’ll always have hope that the next special diet or treatment you try may remove the autism.

What I’d like to see is better understanding of those who are affected. I’d like money to be spent to provide help to those who need it. I sure as hell don’t want sites like those I saw today claiming to represent people like me.

I think, however that they might just have pushed me into action. I’ve seen a few autism advocacy sites, and I’m going to read more and look to offer them my support in some way.

Incidentally, by the time my daughter was due her MMR, the big holes had appeared in the Wakefield report, and we elected to give her the tripple jab. My son has also since had his MMR booster, as the tripple jab this time.

Labels and preconceptions

Are labels important? Does applying a label of Asperger’s Syndrome to myself help or hinder me?

I spent thirty five years without a label to describe my differences, but at the same time I couldn’t escape labels. Those years were hard at times, and confusing too. Without a name to attach to how I was, I was left wondering if I really was different from the norm. I certainly perceived differences between myself and my peers, but maybe I was just lacking in intelligence, or had an odd sense of humour. You see – there we go already – lacking in intelligence and odd sense of humour are really labels that I was applying to myself to see if they fitted. They never quite did.

I think we all need to be able to define ourselves. This labelling of characteristics not only confirms who we are and what makes us tick, but it also tells others a lot about us in very few words – he works in IT, she’s a mother to five kids, he’s single and keeps cats, she’s a doctor. Not only do these labels pinpoint one fact about a person, they also open up a set of preconceptions about other aspects of their lives. These may be right or wrong, but it seems to be a trait that we all – aspie or not – share, to parcel assumptions around the labels we know. I bet the doctor is comparatively well off financially. Is the keeper of cats lonely? Does the IT person have social interaction issues? Is the mother of five children catholic?

When I attached the Asperger’s label to myself, I felt complete for a while. Suddenly a large set of the characteristics that made me who I was could be parcelled under one label – and not only that, for the first time in my life, it was a label that was comfortable – it felt right, and it fitted.

The internal dialogue that the simple attachment of a label has opened has been immense, and very satisfying. In six months or so I’ve explored areas of my behaviour and my interactions with people that I had never seen in any detail before. I now understand a great deal about Asperger’s, and far more importantly, how it colours my life, and I continue to learn more each day. I can’t state enough just how important I feel this is in allowing me to accept who I am, and give me the best possible chance to move onwards in my life in a positive way.

So – the attaching of a label of Asperger’s to myself has been both a powerful and positive catalyst towards understanding and change.

The flip side of this coin, of course is how others perceive this label that I have. I’m much more wary of this side of things.

As I mentioned above, people tend to parcel assumptions around labels, based on their preconceptions of what a given label means. With a label like doctor, then everyone has an idea of the sort of lifestyle that typical doctor has, and therefore whilst still being a generalisation, it’s probably not wild of the mark to assume that any given doctor is financially well off. However, with a label like Asperger’s or Autism, then there is far more of a problem.

I can only speak for the UK here, but the understanding of Autism Spectrum Disorders in the general populace is very low. Everyone has heard of autism – the vaccines scare of a few years ago has seen to that. But ask someone what autism is, and I doubt you’d get a very clear response. I suspect you’d get told more often than not that it makes children withdrawn and uncommunicative. That’s some of it, of course, but far from the full picture. Ask what Asperger’s is, and I’d guess that most people in the UK wouldn’t know. I didn’t until I read up about it and realised I had it.

Saying to someone here in the UK that you have Aspeger’s is quite likely to lead to you having to qualify it by saying that you have a form of autism. This in turn is quite likely to fall prey to the wrong or very incomplete picture that people have of autism.

And this is why labels can prove to be unhelpful, and probably why I’m not running around making my own label public to those close to me just yet.

Instead, I’ve decided I need a plan. When I do make my label public, I want some way to allow those that I tell to easily overcome their preconceptions of what my autism might mean. This blog has a lot of useful info on it, but I can’t ask them to read it – it’s far too long. My ability to verbally explain isn’t wonderful, so that won’t work well either.

What I intend to do is this: I’m creating a concise version of this site. It’s a single page into which I’m going to try and distil what I’ve learnt about Asperger’s. I want to create something that someone who knows nothing about Asperger’s can spend no more than five minutes on, and leave with a good grounding. This way, I can point those that I tell at the page, and hopefully they’ll choose to visit, and leave with some understanding.

I’m not great at keeping my writing concise, but I’m going to treat it as something of a list and make a concerted effort. You can help too – visit the page, read what I’ve written and tell me what I’ve missed. How could I improve some of the points?