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