My quest for an asperger diagnosis ended in the middle of June when I was told the outcome of the testing process was that, mainly due to a lack of developmental history (i.e. childhood), they could find no evidence to support the claim. It has taken until a couple of weeks ago to get this in writing.
This process has been painfully slow and I am not very happy with the outcome. Where does it take me and what can I do now? There simply does not seem to be any support at all. I have no idea whether or not I actually have Aspergers, but there is definitely something 'wrong', that is, diverse, in the way I operate, cognitively speaking. There is no easy way to make that point either, which is part of the problem: there doesn't seem to be an official language or any terminology that I can find. Without being part of the club, officially speaking, do I have any right to use such terms? It's like trying to stumble through life with your eyes shut.
The Work Psychologist had offered to speak to the clinician that assessed me (who, I'm grateful, agreed). Last week I posted off the report along with a consent form tha the DWP apparently require in order for two professionals to communicate. I'm not entirely sure why one is necessary, after all I didn't need to sign one when she (the Work Psychologist) spoke to my GP (nor vice versa).
I presume the WP will contact me afterwards. Or not, who knows; despite her saying all the right things, in terms of support (which itself I suppose given she works for the DWP I should be grateful for), I've no idea what she actually does. It doesn't seem to translate into actual solid support. Not that I've noticed. For example, when I started on the Work Programme she agreed to write a letter in support of the problems I have but then decided that, because the provider is independent of the DWP, it wouldn't make any difference and decided not to bother. I've no idea whether it would have made any difference; given the attitude of that provider in retrospect probably not, but it's better than nothing surely.
If there's one thing I've noticed throughout all my dealings with 'the system', it's that when you decline to do a thing you are accused of not making an effort - of being lazy. But when the positions are reversed it's just practical or realistic, or it's not possible to actually 'make an effort' because of cuts etc. While there maybe some truth in that, after all Work Programme providers really are answerable to no one else, it's a definite double standard that speaks to the nature of the relationship between the individual and 'the system' (I hate using that phrase, it sounds rather childish) that assumes the worst of the former. I don't know how that is ever going to change without a fundamental change in that relationship and...'the system'.
I feel like I'm in limbo really. Things are getting stressful: I have no idea if and when ATOS will call me in for another interview. Ironically the WP advised me to claim PIP! I couldn't bring myself to do this for two reasons: firstly the system is in massive disarray with even dying people having to wait months, and secondly because of that reason - I feel guilty adding to that backlog when there are people much worse off than me who are struggling in these ridiculous delays. Maybe when I talk to her again she can make a better case for me to claim PIP and if she can, maybe she can support that claim. That's the problem I have with her, though, she won't. That kind of concrete support is the one thing she just doesn't provide and is why I am left confused as to what she's actually for!
Meanwhile I have been advised, by the clinician, to pursue another appointment with Positive Step. This will be the third bite of the apple I've taken with them. She said that they are the main provirder of mental health support in the area: in other words anyone that has mental health is supposed to get referred to them, at least initially. If ones issues are sufficiently serious they would refer you to a greater level of support. I tried to explain to the clinician that all they do, in reality, is offer Cognitive Behavioural Therapy - that's it. They have no expertise to offer support for neuro diverse issues or anything like Aspergers, ADD, or Non Verbal Learning Disorder (assuming they believe it exists, unlike the clinician) and, in my experience, CBT doesn't help with those issues.
My problem with CBT is that it requires awareness to put into practise - and practise to become effective. It's almost a catch 22: you dont' have that awareness when you're stressed because you're stressed! I'm not knocking it per se, if it's effective for others that's great, but to apply it to all issues, as the fundamental mental health service, is a very shortsighted approach. When you are cognitively wired differently to begin with, it doesn't change anything. It also doesn't address the reasons why someone might be struggling; certainly it might alleviate a fear of spiders, for example, but it won't alleviate the stress caused by having to deal with the DWP and the fear of having your only source of income stopped - moreover the practitioner won't be in any position to help if you end up sanctioned!
So to summarise, the struggle goes on. Mental health is a unique situation in that it's invisible nature is hard for people without experience to understand let alone empathise. While in many cases a broken leg might be worse, it's a lot easier to get support - everyone can see and understand that problem. Again I make the point there are people a lot worse off than me (cancer victims waiting for their PIP claim to be decided for one!) - and I hate this divide and rule mentality that forces me to make this caveat. Dealing with spectres that can't be seen and refuse to be identified that, while not as serious as cancer, still exist to make life a lot harder than it ought to be isn't easy. We seem to live in a world that doesn't care if you find things difficult unless you are impaired enough to be the acceptabel face of disability. The problem is that leaves the individual struggling not only to get on with the mundane difficulties of life (finding a job, holding down a job, etc), but wrestling with those spectres. Ghosts that might seem no more harmful to others than the greedy phantasm in Ghostbusters, but remain visible only to the individuaal concerned.