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?

Genetics news brings mixed feelings

It’s big news this morning in the UK that scientists have found strong evidence that genetics have a key role in Autism Spectrum Disorders.

If you ask me, it’s bloomin’ obvious that genetics has a key role – I’m a strong advocate of autism being an inherited condition, having reached this conclusion through simple observation.

It’s good to see that steps along the way to understanding this link by science are being made – for I think it’s important. Indeed when I first heard the news on the radio this morning, a source was quoted as saying that the breakthrough was as important as those made in cancer research. I agree.

Whilst I feel strongly that understanding the genetic mechanisms behind ASDs is important, it also worries me.

If, in ten, twenty five or maybe fifty years time we understand the genetic make-up of ASDs, will we use this information to allow in-utero genetic testing for the disorders? Would this testing lead to the aborting of foetuses with the genetic markers associated with ASDs?

This would be highly controversial, because a great many people of the spectrum lead full and (mostly) happy lives, despite having this perceived disability. But testing of this sort is routinely done for Down’s syndrome these days, so why not for Asperger’s syndrome too?

If I wasn’t born 35 years ago, but in the near future, where genetic screening for autism was possible, would I even make it as far as birth? I find this a worrying thought.

Each and every birth is a miracle of a million genetic coincidences coming together, but I, for one am not bitter to have the genetic make-up that life has given me. I wouldn’t change it, and I would sincerely hope that the future-me with similar genetic make-up would be allowed their chance at life.

Could I explain face to face?

I’ve taken a look back at what I’ve written here over the last couple of months and I’m a little amazed at myself. There’s a lot of powerful and profoundly personal thoughts expressed, and some pieces of writing that I’m very proud of.

My little retrospective through what I’ve written has left me wondering if I could have explained the same thoughts and feelings face to face with someone. With anyone.
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How I was taken in by press distortion

The New Scientist has just published an interesting article by Simon Baron-Cohen about how his latest research into autism got misrepresented in the UK press earlier this year.

Simon points out that whilst the authors of the article, which appeared in The Guardian in the UK, did a reasonable job of reporting the actual facts of the study – how it measured a correlation between testosterone levels  in the amniotic fluid of 235 children who do not have autism and various character traits – the article badly misrepresented the results of the study. Simon feels that the editors of the article distorted the facts by attaching misleading and wrong headlines and by using an emotive picture. The article also linked the research to pre-natal testing for autism – something which Baron-Cohen points out wasn’t a part of the research at all.
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John Elder Robison on neuro-psychological testing

John Elder Robison recently wrote in his blog Look me in the eye about the neuro-psychological diagnosis of Autism Spectrum conditions, and how he feels this must inevitably be a positive step for those on the spectrum. He’s since followed this article up with another, that explains how in light of comments that he’s received he can see that some people can take negative things from the experience.

I think that John has great insight into his condition, and hearing the point of view of someone else with a similar diagnosis to myself is proving to be extremely useful, as it allowing me to make connections with my own symptoms.

A couple of points in the two articles really stood out for me, and I thought I’d expand on them here.

In his original article, John says:

There are some who say, “There’s no such thing as normal!” To those people, every single kid has a diagnosis waiting to be found. I don’t know that I fully agree with that, but I do think knowledge is power, and the more you know about yourself, the better off you are.

I agree completely.

I’ve always known that I was “different” from my peers, and in that sense I’m not normal. My wife has said to me recently that there is no such thing as normal, so John’s words struck a chord with me. My wife’s point of view is perhaps the opposite of Johns, however. By “no such thing as normal”, my wife means to say that no-one needs a diagnosis – you are who you are. She sees the label of not being normal as a negative thing, when in the end everyone is unique.

Whilst I understand why she feels this, I think she misses the point – it’s true that everyone is unique, but if you look at people in general then they tend to behave and react in broadly the same ways as each other. here are countless unspoken rules about how human interaction works, for instance. I often don’t fit this mould, and in that sense I’m definitely “different”, or if you prefer, “not normal”. To me the label is simply fact, and not something with either positive or negative meaning.

This is important to me, because if I considered myself to be normal, then I couldn’t possibly be on this road of self-discovery on which I now find myself. I know and appreciate that I’m different to the norm, and I’m keen to discover and understand the many subtle ways in which I do differ. Only when I have done this will I have the knowledge I need to make changes in my life that improve it and broaden my horizons.

Knowledge really is power.

In his follow-up article, John says:

When I wrote my original post, I thought how much diagnosis meant to me by helping me understand exactly how my mind differed from other minds around me. For example, the simple insight that I miss nonverbal cues was life-changing. I seized upon the specific behavioral issues and set about constructing a better life. It worked. Words cannot express how much better my life is, thanks to the self-knowledge I’ve gained since learning about my Asperger’s.

For some other people, it does not work that way because they become sidetracked by preconceived notions about “having a diagnosis.” Instead of looking at their own specific issues, they look at broad statistics associated with the diagnosis. They see phrases like, 32% can’t live independently, or 66% never get married and have a family. They become trapped in generalities rather than focusing on specific issues to make their own lives better. They interpret those general statistics as a prediction for their own future, when it’s nothing of the sort.

This sums up brilliantly my wife’s major worry about my investigation of AS. She worries that I will get caught up in the general statistics surrounding the condition, and that it’ll just drag me down until I become one of the statistics. She feels this way because the sort of statistics John mentions above were amongst the first things I found when I started researching AS on the Internet. I spent some time explaining them to her, and she can’t forget them.

There is no getting away from the fact that some of these figures are devastating to take in when you first realise you have AS. It’s easy to see how they can be devastating to loved ones too. I think it’s important to note, however, that I’ve proven throughout my adult life that I can live independently, and I have managed to find myself a wife and have two kids, so the negative aspects of these statistics don’t apply to me personally.

There’s another reason why my wife worries about me falling foul of the gloom of generalities. It’s because I have no swift answers for her. Investigating AS, and thus my differences from the norm has become one of my Special Interests, and as such it consumes a good deal of my spare time. My wife can see this, but she can’t see much in the way of answers or conclusions being reached. I’ve been on this road for four or five months now, and I’m still researching. This worries my wife, perhaps understandably.

I feel, however that I make progress almost every day. I focus on small things at a time, and then try and jot down my thoughts in this blog. Each little connection feels like another piece in the large jigsaw that describes my life. I hope that as time passes my articles here will form something of an encyclopedia of my understanding of AS, and thus my understanding of myself. In time I hope it will start to paint picures of how I’ve changed too – how I’ve been able to improve areas of my life due to the insight I’ve found.

I’ve not got a formal diagnosis, but I didn’t need one to start my journey. An informal self-diagnosis was enough to set me on my own personal road. Does that mean that I’ll never feel the need to get formally diagnosed? Only time will tell.