Starting my Asperger’s journey

Last Thursday I went to my GP in New Malden (or rather, one of the GPs at the clinic I’m registered at), and asked him to refer me to those who might be able to assess me for a possible Asperger’s diagnosis. This is something I have been putting off doing for some time, but my family has been encouraging me for a number of years but particularly since the crash in 2008 left me out of work. Why did it take so long? Well, that’s complicated, but I took the first tentative steps back in 2001 or thereabouts, approaching Prospects, a project run by the Autistic Society that helps people with Asperger’s syndrome find work. However, at that time, work was plentiful, and I did not return to them because keeping work bookings seemed more important at the time. I didn’t seriously reconsider it until 2008, when it looked like I might not be able to get agency driving work for much longer, something which finally (and suddenly) came to pass in autumn that year.

I’ve been meaning to write about this since last Thursday when the appointment actually took place, but I’ve been putting it off (much as I put off everything to do with this) but having got involved with a campaign of autistic and Asperger’s bloggers against the ridiculous Communication Shutdown scheme, I’ve found my blog on the link list of at least two of them ([1], [2]), and the campaign led to an “Autistics Speak Day” (it seems that in US parlance and in line with the forthcoming DSM-V, Asperger’s syndrome is being lumped in with straightforward autism, although I personally don’t identify as autistic). So I thought this might be a good day to start writing about this and, perhaps, if I can finish it before nodding off, actually post it.

I changed my doctor because of this. I had been registered at a family-run surgery on my side of New Malden. However, I wasn’t happy approaching them with this issue, because of a series of incidents affecting me and others in my family — the time when I called them about a stomach bug and they clearly couldn’t wait to get me off the phone, the time when they tried to put me on statins for supposedly high cholesterol on the basis of a test that wasn’t done properly (and my diet is well balanced and I’m reasonably active), and the time when one of them said to my Mum that teaching really isn’t much of a stressful job (it is, particularly if you’re the head of a large primary school on a deprived council estate). I was encouraged to switch to the clinic my aunt has been going to for a while, which is right at the other end of the village, a 20-minute bike ride away (compared with about 7 to my old surgery). This is another thing that made me hesitant, since I really wouldn’t want to have to make a journey that long if I were ill (then again, if I were really ill, I’d go to the hospital, and even that’s as far away as the clinic).

I finally made the switch a few weeks ago; I had to clarify that I was eligible to actually sign up with them, since my address is literally right on the southern boundary of their catchment area and they seemed to think, until I proved otherwise by showing them their own map, that it actually is within their boundaries. They tried to get me to sign up with a practice which is not even in New Malden. They wanted multiple forms of ID, including bills or bank statements recently sent to me at this address (and I’m not the bill payer, but I have a bank account and a mobile phone contract). Once that was sorted, and after waiting what must have been over two weeks for a phonecall from them to tell me my records had been successfully transferred, I called them to ask if they had, and if they wanted me to come in for a first appointment. They had, and they did, so I went for that appointment two weeks ago Wednesday, only to find that I wasn’t seeing a doctor but a healthcare assistant who took my pulse and asked a few basic questions. It was disappointing, to say the least, that I wasn’t seeing a doctor and had to make yet another appointment to get the referral.

At the same time, the Job Centre was contacting me with demands to go on their “New Deal” programme, which is some sort of intensive job-finding course — of course, they can’t offer this locally, so you have to go to Mitcham or Wimbledon or Croydon to get it. For this to happen right at the time when I’m pursuing another angle of trying to get work which better fits my abilities than driving vans or office admin is inconvenient, to say the least. The job centre advisor agreed to put it off for a week so I could see the doctor, but didn’t ask anything about the progress in that area when I went back last Tuesday; she just booked me on the course in Croydon for this week. I spent most of my time there today either filling out paperwork, or doing literacy and numeracy tests a seven-year-old could do, or reading my paper (or the internet on my phone), and spent one hour applying for the same jobs I’ve been trying for since 2008: van and small truck driving, and basic office admin. Something which has caused some consternation in my family is that I, someone with a good brain and a degree, am doing what is basically menial work (when I’m doing any), and this was mentioned the first time I approached Prospects and is still true now. Never mind my degree; I didn’t go through all the difficulties of boarding school for that.

When I finally made it to the clinic last Thursday, I ended up seeing a Polish doctor with my aunt accompanying me (my aunt having been a teacher and has been involved in special needs her entire career, and was closely involved with me when I was at school). I found it difficult to explain to the doctor why I suspect I have Asperger’s because, I suspect like many adults with the condition, I don’t seem anything other than normal when you’ve only been seconds in my company (that’s not true for many children with it). I got a bit worried when he started talking about counselling, and my aunt had to ask him what background and qualification these “counsellors” might have as we were seeking someone to make a formal diagnosis and that “counselling” is something we associate with bereavement or trauma. He reassured us that they were indeed psychologists, not trauma counsellors, and that “counsellor” was just the term equivalent to the one they use in Polish for psychologist.

I’m not sure the title of this post is strictly accurate, since my “journey” started properly when I was a child, and the most difficult parts of it were my early teens, of which I have written an awful lot here. But I’ve been told that, had I been going through the school system now, I would certainly have an Asperger’s diagnosis and that my parents were told that I fulfilled several of the criteria for autism when I was at school, and perhaps some of these are things I’ve learned to paper over as an adult (as is fairly common). I did worry that I would not be able to adequately explain my situation, and that if someone were to accompany me, it would be suspected that they were “coaching” me to give the answers they wanted. But it hasn’t happened so far. I’m quite relieved that I’m over what I thought would be the biggest stumbling block in this whole process, although not having seen a psychologist as such since I was a child, I don’t really know what to expect in the future. I just hope that the facilities that were available in 2001 are still available if and when I get a diagnosis, rather than having melted away in the new economic climate.

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