Asperger syndrome

I’ve always been a very isolated person. I spent much of my childhood immersed in books of a level far beyond that appropriate for my age. I have never been comfortable meeting new people or in new situations, I had very few friends at school or college, and struggled to maintain any close friendships. I struggle with small talk, finding it difficult to know what to say and often end up with awkward silence around other people. The friends I have known have nearly always been computer geeks and the topics of discussion technical rather than personal.

A few years ago I began to notice something. My social circle was full of scientists, computer geeks and similar people. Many of  them had various problems fitting in with “normal” people too. Some of these problems were attributed to depression and anxiety but a couple of my friends were diagnosed with Asperger’s syndrome which is an autism spectrum disorder. I realised that I had some similar problems to these friends but as far as I was concerned I had managed to grow up, get through school and university, find some friends, and get married so I didn’t need to think about it. I functioned.

Then I came across the Autism-Spectrum Quotient. The AQ test asks fifty questions related to social interaction and preferences and gives a score which can identify those who may be affected by autism spectrum disorder. Here’s the introduction given for the test when it was published in Wired magazine in 2001:

Psychologist Simon Baron-Cohen and his colleagues at Cambridge’s Autism Research Centre have created the Autism-Spectrum Quotient, or AQ, as a measure of the extent of autistic traits in adults. In the first major trial using the test, the average score in the control group was 16.4. Eighty percent of those diagnosed with autism or a related disorder scored 32 or higher. The test is not a means for making a diagnosis, however, and many who score above 32 and even meet the diagnostic criteria for mild autism or Asperger’s report no difficulty functioning in their everyday lives.

I took the test and scored 32 which is about the level where it could indicate a problem. I still didn’t worry about it since I still functioned; albeit not very comfortably around new people, or when out at clubs or parties unless with my friends with similar issues. Since then though, I have come to realise that these issues were more of a problem than I realised. I would often find myself unable to cope with people and would cancel things at the last minute, preferring to stay in with my computer. I had some very awkward times when out for the evening, ending up in silence for half the evening sitting alone in a corner unable to go and talk to people. I realised that I had only reached the level of social interaction that I was at because in the past I had been forced to talk to people through church, then at university through the Christian Union, and then been introduced to people by my wife. I had learnt some social skills because I had to. A couple of years ago I joined twitter and started to talk to people about illness and politics. After meeting a few people that I knew through twitter I realised that I had a much easier time talking to them because I had already got through the parts that I struggle with by chatting on the internet first! I now have far less anxiety about meeting people in person as long as we know each other through the internet first.

There still wasn’t enough of an issue to follow up with any medical professional but I became severely depressed in late 2010 and have been seeing a psychiatrist for a year or so now.  My anxiety has increased to the point of panic attacks at the thought of going out around people, and doing things like driving to a destination but then being too anxious to leave the car. I knew people through twitter who have asperger’s and autism and chatting to them in the last few months made me realise that there could be significant crossover between Asperger’s and the anxiety which I have been trying to deal with. I re-took the AQ test and scored 39 – a score which I am sure has been boosted because of my depression and anxiety. A conversation a few weeks ago made me decide to raise the issue with my psychiatrist.

I was worried that what I said would be dismissed as hypochondria but to my surprise the psychiatrist agreed with me that I needed to address this and that doing so could well help me to deal with my depression and anxiety. He asked me questions about a few other things, which brought up problems with understanding speech, understanding anything at all in loud environments, being isolated and in my own thoughts in the middle of conversations, issues with being touched, obsessiveness, trouble dealing with changes and unpredictability. He has referred me to the Adult Asperger Service for a full diagnosis. I have received confirmation that I will be seen by the service but unfortunately the waiting time is sixteen months. Although that is a long time I am fortunate to be able to see them at all. I know that in many areas it is nearly impossible to get a diagnosis for Asperger’s as an adult. The National Autistic Society recognises that many people will be self-diagnosed because they cannot see a professional to confirm it.

In the meantime I have decided that I can’t wait sixteen months to try to start dealing with this and so I need to do some research of my own and find ways of coping with the issues caused by asperger’s and ways to identify what of my anxiety might be caused by that. I need to learn to understand this more and live with it so that maybe I can start to work on getting rid of my depression.

My thanks go to all the lovely people who have chatted on twitter about it with me.

This is a great article about adults with Asperger’s: The Hidden Autistics – Asperger’s in Adults

You can Take The AQ Test for yourself if any of this sounded familiar. I also made a record of one of my conversations on twitter about autism.

There is lots of information at the website of The National Autistic Society.

 

Author: Latentexistence

The world is broken and I can't fix it because I am broken. I can, however, rant about it all and this is where I do that when I can get my thoughts together. Most of the time you'll find my words on Twitter rather than here though. I sometimes write for Where's The Benefit too.

18 thoughts on “Asperger syndrome”

  1. The AQ test can be massively skewed by other conditions. For me all the questions about listening/hearing have the answer that would suggest an ASD because of my APD.

    I can’t drink alcohol anymore, it exacerbates several of my chronic health problems. So all the questions about enjoying parties/social situations also would suggest I have an ASD when in fact it’s just boring being the one sober person in the corner.

    Though surprisingly I still only score 17. Though I acknowledge that I’m above average at reading facial expressions and body language thought nurture rather than nature.

    1.  Yeah, I’m unsure whether people should try to “correct” for factors like those you mention when doing the AQ test – but then, the AQ test is stated as not really being useful for individuals beyond a bit of interest.

      Like a lot of other problems (such as dyslexia), high intelligence can mask HFA/AS. Smart people adapt, develop coping strategies, and learn their way around difficulties

  2. This brings to mind something I’ve wondered about before, but not dwelt on. I don’t have much in the way of autism-spectrum traits, and doubt that I could ever be considered aspergic or any other autism-spectrum diagnosis.

    However, I get on very well with ASD people. It’s almost like, while I have no trouble with the “instinctive” social skills that ASD folks have trouble with, I don’t particularly expect other people to manage them. There are numerous occasions in my life where someone I suspect would meet ASD diagnostic criteria are having trouble fitting into a social situation, like a uni society, and I’m one of the people they are most comfortable with. I have no idea why this would be.

  3. On a separate note, I do wonder if there are other axes to neurodiversity than just ASD stuff. I’m very not-normal, I don’t understand how most people can do what they do, or not do things I do, and so forth, but not any of the things that are ASD issues – social stuff is no problem, I can empathise very well (have trouble avoiding it a lot of the time, even when I want to)… but there seem to be different ways in which my mind works differently to others, even leaving the bipolar aside.

      1. There is a condition which mimics ASD and has come to light which is called “Pathological Demand Avoidance Syndrome” – it is almost like autism, but has some big variations; rather than no imagination, PDA people have extreme imagination which they can get lost in if stressed, they desperately avoid tasks they hate, and ASD strategies don’t work. I can see a lot of that in my son. But I also see it in myself and pretty sure that’s me. I’ve learned to cope with it and turn the imagination into writing and painting, but still, it makes doing some tasks impossible. I simply can’t do that – not because I’m lazy or difficult, I just literally cannot.

    1. I don’t think it’s necessarily bad. It indicates that you think differently and you may or may not have problems relating to society as a result. I like how I think, if I didn’t think this way I wouldn’t be me!

      1. ASD has been suggested to me before. Might be why one particular person kept telling me off for “braking social norms” when I knew her, and why I struggle to get through fiction but love science books. But I agree, I like how I think too.

  4. Thanks for opening up the comments again here.

    Whilst campaigning, I’ve found I am very drawn to those on the autistic spectrum, There is something about the way they approach problems from a slightly different viewpoint and that view can be invaluable. In my experience, my friends with ASD are extremely intelligent, great on detail and wonderful researchers. Often they have spotted seemingly tiny things that complete some unfathomable jigsaw. Yet those on the ASD spectrum are LEAST likely to be employed. I guess employers just don’t hire them.

  5. interesting. My Son has aspergers and over the last few months i (and others) have wondered the same about me, but I haven’t felt the need to do anything about it. Partly because in my view I don’t need a label, its about understanding how i am, accepting it and managing it. However I did ‘take the test’ which came out at 26. but i would take any of the results of that test with a large pinch of salt. There is a fair amount of criticism around from people on the autistic spectrum of some of Simon Baron-Cohen’s work. Like others the results of that test were skewed for me by the fact that I’m visually impaired (so is my Son), which has a big impact on being able to read body language etc. The ‘autism community’ is a huge and growing voice and it seems to me that there is a need for sick and disabled people to engage with that community and try to develop a common model which has the person at the centre and builds on the ‘social model’ but recognises that some people also have health or cognitve / sensory issues that cannot be removed by society, but could be accomodated with more understanding and an acceptance that we cannot all contribute to the world in the same way. Sorry, I’ve waffled, and I hope I haven’t barged in, uninvited as a newbie. But it was an interesting post.

  6. Very Interesting stuff. I often wonder if I have aspergers or something similar in addition to diagnosed ailments. Reading up on it there are a couple of key behaviours which I do not seem to exhibit, but many others are right on the money. I can relate to most of the anxieties you exhibit.

    I have always had difficulties with social interaction which have worsened with time, but no problems feeling empathy. I try to avoid the news, bad things happening to people, putting their anguish on display, presented like a form of entertainment, seems to be bothering me more and more recently. Perhaps if I were fortunate enough to be normal I could enjoy the misery of helpless people and the satisfaction of judging strangers.

    I tend not to look at peoples faces/eyes so I dont know much about my ability to read body language :-D. Unfotunately, it has too often been retroactively that I get the chance to see peoples motives. As far as I am concerned, everybody is trying to steal my brain juices and harvest my neurons until proven otherwise.

    I guess there are many afflicitions that share the same symptoms making diagnosis difficult.
    Scored 34 on the test. I find it very hard to talk about such things to people in a serious manner, even doctors, so I may never know for certain.

  7. Scored 27 but I think that’s more likely to be down to problems with anxiety than anything on the autism spectrum. This could well be something worth raising with the NHS mental health staff though – it’s not a connection I had thought of before and it could be helpful in trying to resolve any possible root problems.

  8. Hi there

    I have high functioning Aspergers and this had been very intrersting to read. Thank you

  9. Hi, I was referred by my GP and was given an appointment for a assessment 4 months later. If you are in Cambridgeshire/Peterborough then let me know as I can most probably help you speed things up.Have received the questionnaires in the post yet? Thanks.

    1. I’m in Worcestershire, which seems to be one of the worst places for healthcare. I’ve not been sent anything apart from confirmation that I’m on the waiting list.

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