Last Wednesday I had a meeting with the asperger’s diagnosis person for them to clarify their ‘inconclusive’ diagnosis; meanwhile I wait for their report in writing.
As expected this meeting didn’t really help – they aren’t going to change their position even though ‘inconclusive’ surely must default to ‘conclusive’ if any of this is going to matter. In other words, why don’t you err on the side of caution? Why wouldn’t you give the patient the benefit of the doubt? Otherwise why not admit that it is conclusive: conclusively negative? At least be honest.
The reason they give is down to a lack of developmental history to cross reference. I don’t know if this is simply the way the testing process is structured, for right or wrong, and therefore out of the clinician’s hand. My feeling, if I’m honest, is that, if someone has the ‘symptoms’ (words are poor substitutes here, I am not an expert in any of this) then what does their history matter, and if it’s not one condition in particular, so what? These are ultimately just labels; names for disabilities and disorders people face.
That said there was one glaring issue that warrants discussion. I had given them, as supporting evidence, the report provided by the Work Psychologist. When I asked what they made of this the clinician mentioned the following issues:
- The test undertaken by the WP was out of date (whether or not this is actually a problem I don’t know).
- The WP didn’t record the actual scores of the test: the clinician said, on the face of it the deviances in areas of understanding revealed were not per se a problem, but without knowing how strong those deviances were it was meaningless.
- The report mentions something called ‘Non Verbal Learning Disability’, but the clinician denied this even existed.
I subsequently put this to the Work Psychologist. If her report is compromised then I wanted to know why. Unfortunately the records were not kept past two years. Apparently this is standard procedure. However she did say that the test being out of date is irrelevant, and also said that NVLD does exist. Upon refletion why on earth whould she go to the trouble of lying about a non-existent condition? That seems an extraordinary thing to do; I looked it up on google just to see if it was real. It is. This is a condition, the peculiarities of which I don’t understand and are a separate matter, that, despite what the clinician said, is a thing.
So where does that leave me? For all I know that one detail could be the key to unlocking all this. somehow I doubt it; I intend to confront the clinician when the report arrives about this. Why does she claim something that does exist as a disorder doesn’t exist. It’s precisely this that makes it difficult for mental health sufferers (and physical health sufferers for that matter, it’s the same issue) to get taken seriously. Without proper – i.e. recognised – diagnosis for one thing it makes claiming things like DLA/PIP impossible. It will certainly make a reassessment, which, now that my claim passes the 6 month mark, is a possibility.
This to me seems utterly irresponsible: I am caught between two experts neither of whom seem to be able to ultimately help me. To be fair the WP has offered to take another look at the report and, if the clinician is willing, to actually talk directly to her. I’m not confident this would achieve much but I am of course grateful she is offering to help; it’s just a pity that help doesn’t go further. Why, you might ask, can she not diagnose herself? She is a psychologist after all!
To summarise it’s another example of this fragmented system and how, when it’s there to help, it’s fatally reluctant to do what’s needed. Getting an actual diagnosis seems to be the last thing they want to do; a thousand and one reasons are given as to why they can’t and why they seem reluctant. Unfortunately, while these reasons seem credible and compelling, they don’t really get you to a place of actual help. Even the DWP’s own Work Psychology service eludes me: just what are they actually for? This process has taken 5 months and I’m in the same place as when I started.