Today was the day that I visited my GP to ask for a “Formal Diagnostic Assessment” for Asperger Syndrome. This was a big deal for me and took some working up to. I was quite anxious when I went in. Here’s what happened during the appointment.

The usual formalities were done (confirm name etc.) and the doctor asked what I wanted. I said that I believe I have Aspergers and he asked me to explain why I think this. I had written some notes as I find this helps me remember the things I want to say in meetings (I find this very useful at work for maintaining conversational fluidity) and told him that I had discussed the matter with the National Autistic Society who advised me to ask my GP to refer me for a Formal Diagnostic Assessment. I then set about listing the traits that I exhibit that lead me to conclude Aspergers. (I bet this all looked fairly typically Aspergers.)

He then asked how I was during childhood. I told him I was bullied relentlessly and hung out with the other misfits and outcasts. I said I was academically fairly bright, achieving AA in GCSE Science (98% in my Science GCSE mock) but getting a range of results down to an F. I did my degree in Biology.

I also made a point to tell him about a job that I now think I lost because of Aspergers, although I had never heard of the condition at the time. Three years ago I was doing well in a job and then got a new manager who, within a couple of months of appearing on the scene, had managed me out of the business (i.e. I jumped before I was pushed). The results I was achieving in the role (and being paid bonus on) were really pretty good, however this manager thought my relationships with the customer were somewhat lacking. With hindsight, it is now clear to me that had I had a diagnosis at that time, the company should more reasonably have supported me in some specific aspects of the role. With a diagnosis, the protection of the Equality Act 2010 becomes a possibility.

Well, my doctor readily agreed that many Aspergers traits seem to be present and that he would be very happy to refer me to a psychiatrist for assessment. So far, so good, and all of the above really was quite painless.

All this was my “best case scenario”.

Next came something of a glitch. My local NHS area has failed to commission any diagnostic services for adult Aspergers. Children are covered, as are previously diagnosed adolescents moving into adulthood. If you are a new adult Aspergers case in this area, you simply can’t get diagnosed. My GP says that this a know issue that gets some attention at the commissioning meetings he attends and will hopefully be resolved in the near future.

All I can do is simply wait for Adult Aspergers diagnostic services to be commissioned locally and join the backlog. Apparently, under normal circumstances there would be something like a six week wait to see the psychiatrist.

My Aspergers Symptoms

Here are the symptoms I presented to my GP:

  •  Inability to make and sustain relationships. I have made two long-term friends in my adult life, plus a wife.
  • Slow to pick up on social cues. I often don’t realise that a conversation is over until the other person glares at me and realise that I have lingered a little too long.
  • Occasional trouble judging other peoples personal space. This really is the sort of thing that causes people to find you weird and creepy.
  • Supremely bad at chit chat. I answer other peoples questions and then the exchange fizzles out. Later I realise that I should ask the same questions back to constitute a conversation.
  • I have a tendency to over explain things.
  •  A preference for the same topics of conversation time after time.
  • Very much overwhelmed by social situations. Bamboozled by more than come conversation going on at once.
  • Hypersensitive to noise, particularly multiple simultaneous sounds.
  • Hypersensitive to certain types of light. I find some light bulbs to be far too yellow.

 

I have decided I should get a proper diagnosis for Asperger’s Syndrome, but didn’t know how to go about this. I did some basic research and discovered the existence of the National Autistic Society and their pages about Asperger’s. Apparently adults can have trouble being taken seriously by GP’s. After all, we’ve made it this far!

During a lunch break, I took the first step into progressing this venture from something in my own mind to something that I am prepared to talk to other people about. I called the National Autistic Helpline. Here’s what I learnt, most of which I didn’t actually know.

  • The Autism Act (2009) makes a legal requirement for local authorities in England to support autistic adults (children are covered under other arrangements, as are the other UK nations). The existence of this act came as a complete surprise to me.
  • Local authorities must offer a “clear pathway to assessment”.
  • A GP must refer you for a “Formal Diagnostic Assessment”.

What to do at the Initial GP Appointment

It was suggested that I prepare for the doctors appointment in the following way:

  • Make a list of the reasons why you think you have Asperger’s.
  • Relate these reasons to known symptoms of Asperger’s.
  • What difference do you think a diagnosis will make to your life.

 

I am a 39 year old British man. I am a perfectly average person, living an average life with my family. There is nothing unusual about me at all. Except, over the last year or so it has dawned on me that I may have Asperger’s Syndrome.

I have decided to seek a formal diagnosis for Adult Asperger’s Syndrome and have a doctor’s appointment to start this process later this week. I have very limited knowledge about Asperger’s and this whole adventure is something of a leap into the unknown.

My primary motivation in starting this website, is to record what happens during the process of seeking a diagnosis for the benefit of others who find themselves in a similar situation. My secondary motivation is as an outlet to discuss how the possibility of having Asperger’s Syndrome might be a contributing, as yet unrecognised, contributing factor to my pretty awful mental health.

How Did I Come to Think I Might Have Asperger’s Syndrome?

Whilst I had heard of Asperger’s, I had always assumed this was a condition associated with autism and “learning difficulties”. Well, I haven’t got any of those. In fact I have an IQ somewhere around 140 and therefore categorically not autistic. Anyway, autism is something to do with children being naughty at school, isn’t it?

A couple of years ago, in the space of a couple of months, two grown men that I know of were diagnosed with Asperger’s. One of them is my cousin and would feature in a list of the top five people I think are most like me in personality. For reasons I have forgotten, I filled out an online autism quiz. I have since learned this is the AQ Test (autism quotient) and is a recognised tool (among others) in the diagnostic repertoire. I got a score of 40 out of a possible 50. The score on it’s own was pretty meaningless without additional context – what is a normal score? I got my wife to do the test on my behalf and got a similar score. She then did it for herself and got something like a 10. A massive difference. Reading more, I learned that 80% of people officially diagnosed with Asperger’s score above 32 on this test. You can find the AQ Test in lots of places online including here.

Well, so what, we’re all different and I didn’t think any more about this for some time. Then, two things happened at the same time.

First, whilst popping out to grab some lunch, I happened to hear a programme on Radio 4 of an interview with a scientist called Penny Andrews who was diagnosed as being autistic in her thirties. The revelation was in a phrase she said exactly at the moment I tuned in. She said “… I got diagnosed with anxiety and depression, but it never felt quite right that that was what it was.” Bingo. The penny dropped. This lady was describing an experience similar to mine. If I do a personality test, I show up as an Introvert. I always put my lack of social accomplishment down to introversion, yet these traits now make so much more sense in the context of autism.

You can listen the programme, John Harris Talks to Penny Andrews about Autism. I hope you’ll find it as insightful as I did. I have listened a few times and on each occasion feel like it is 15 minutes well spent. (Also, Penny Andrews gets a mention in this interesting article for the Guardian.)

The second thing was that my wife studied a qualification in “Understanding Autism” through work she was doing at a school. I mentioned my thoughts and asked if she thought I might be “on the spectrum”. Without hesitation, and perfectly naturally she replied “God, yes”. Well, that was a surprise. She might have bloomin’ mentioned it before! Apparently, these traits are quite apparent in me but I have never noticed them myself.

Now, after much reading and introspection I have come to the general conclusion that Asperger’s Syndrome is a perfectly logical diagnosis for me. Self-diagnosing offers me no useful help. Either I am or I’m not, and it is necessary to know either way in order to decide on what I need to learn about myself in order to function more successfully as a human-being. Hence, I have decided to seek a formal diagnosis, and to also blog about the experience here.