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Testing, Testing...

Had a pair of aspergers assessment appointment during February; it turns out they actually want a third appointment. This was sprung on me last week when they wrote to me claiming we’d already discussed this (we hadn’t), and copying the letter to the wrong GP (by wrong I mean a GP I don’t really want to deal with again). Granted these aren’t particularly epic problems in the grand scheme of things, but I cannot deal with surprises like this and it put me out of sorts.

Besides I’d already had the only 2 appointments I was told about and was waiting the result. Now I feel like I’ve been sent backwards on the path somewhat. If I’m honest I have a suspicion my expectations are completely at odds with the diagnostic process and those of the people administering it. I am looking for a concrete diagnosis and I explained why (three letters: DWP). I don’t think that is a priority for them, nor do I think they understand why it is so for me.

First Assessment:

70% rather ordinary questions about how I feel as well as stuff I thought was rather mundane, if personal (obviously). Like a mildly pleasant chat with a GP; nothing I thought terribly incisive. I expected more to be questioned on the sorts of things I found in here; this test is one of the things that made me pursue an actual diagnosis (even if it’s an online test).

The remainder comprised a series of practical tests that seemed a little Ƨhildish' to me – as a grown man. That’s not trying to be arrogant or judgement (though it probably is); I just question its efficacy in dealing with someone aged 40. I think the process is really optimised for younger people since they like to diagnose spectrum disorders early on. I guess not.

The first consisted of a short book called 'Tuesday'. It's a short book consisting of images laid out like cartoon panels inviting you to provide the story they suggest. The only text comes when the narrative tells the time. It features frogs on lily pads flying through a small town. See what I mean by childish - or child like? I felt rather odd being asked to explain the story. Perhaps that’s the point.

The next test was to explain what was going on in another, albeit much cartoonier, picture: a holiday resort on a palm drenched beachfront, filled with lots of people. It looked a lot like those 'Where's Wally' images. After I answered I was informed that a previous patient pointed how everyone looked out of proportion. I didn’t notice this, should I have I wonder? It's a cartoon; of course they look out of proportion. It seemed ‘natural’ in that respect.

Test number three was a series of images as a sequence of cardboard panels laid out specifically. Again there was a narrative for me to discern, after the images were taken away. The images were of a fisherman catching a fish followed by a cat stealing the fish before a heron steals it away from him. Once more it seemed ‘easy’: the images were obvious and not terribly complex, perhaps some deeper subtext lay behind the motivations of the cat – who knows, it might have contained a metaphor for religion or something. I find myself continually trying to second guess what is being asked of me for fear I somehow ‘fail’ – after all I might not technically have aspergers. It’s difficult to know what to think, or how, in this situation, though I can’t stop trying.

Next I was asked to explain how to brush your teeth. I was to pretend the doctor did not know how and then set about explaining. Was I to fail this, or be very good at it? I was confused by where to begin and had to enquire to set some parameters, such as could I assume the doctor knew why one would seek to clean their teeth?

Finally a bag filled with everyday objects (no cuddly toy) was presented for me to pick 5 to weave a narrative of my own choosing around. Surprisingly difficult, but I came up with something. Not sure how failing to devise anything gets translated and therein lies my problem; throughout the whole thing I felt myself trying to second guess what they wanted and to worry that i wasn't answering truthfully but to tell what was required to get a diagnosis, even though that would surely be dishonest. Perhaps that’s natural. Its’ hard not to, given the nature of this process.

Second Assessment:

They wanted me to, but I couldn't give them the details required about my early childhood. It just wasn't possible. I knew this and so did they as I'd advised them beforehand. I did give them the report made a couple of years earlier (so long ago!) by the Work Psychologist; perhaps that’s what has prompted a third appointment.

I'm not really sure what to say, quite frankly. The questions were fairly prosaic. Again nothing like the questions I was used to (from such as the online tests). Also nothing like the test carried out by the Work Psychologist from the DWP, whose report I have passed on to the diagnostic team. That test was more practical and there were no questions about my childhood. It didn't come up. Also when the test was complete a formal resolution was undertaken. Consequently that process, while still somewhat esoteric it felt more relevant; this process just felt like a conversation.

I think expecting to come out of this with a binary outcome - positive (hopefully) diagnosis or negative diagnosis - is just not going to happen. In fact I think my expectations are most likely to be completely at odds with what the diagnostic people think or how they operate.

I can't second guess the outcome, but I'm not hopeful at all. I'm glad I went through it, though this will be my only chance to do so. I can't really articulate this particularly well: I just feel that my expectations are wildly out of step and that at best I will get a reply saying 'while we think you have problems, we can't diagnose anything'. This is not what I want and won’t help me at all.

I'm not angry about it; it's just how it is I think. The experience of an asperger type person just doesn't conform to expectations from the likes of the DWP and, I suspect, the medical profession. It's just something people have to manage.

The third appointment will be posted to me. It seems they have some problems getting rooms in the local venue, despite me being told this was something that had been arranged with the local CMHT (who own that venue) last year. I’m not sure what the problem actually is, they aren’t the most organised of organisations!


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Well that's that for pursuing a diagnosis for Aspergers or anything remotely similar.

I contacted the Patient Advisory Liaison Service (PALS) to try and sort this out after being lied to by the clinician regarding referring me to the ADD (Attention Deficit Disorder) people. That never happened and she continues to deny saying she would. Of course I cannot prove this and so the patient-doctor dynamic kicks in: I'm the lowly patient, she's the expert doctor, her reputation versus mine and so who wins?

I could make a complaint, but what would be the point. I might get a nice letter in a few months time saying sorry in a mealy mouthed way, but it doesn't get me any closer to what I need. That being a diagnosis, a formal, written and recorded, recognition of the issues I deal with. Lacking that, dealing with the systems in society, chiefly the DWP, becomes more difficult. Unfortunately the medical profession doesn't seem to care about that.

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