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.
At least with cancer there are set pathways for diagnosis and treatment, though not always for the aftermath.
ReplyDeleteShe shouldn't have told you to go to Positive Step. They are probably about as far away from being able to diagnose you as a piece of frozen cod would be.
You need a proper referral to the CMHT bypassing Positive Step. This will probably involve being initially assessed by a CPN who has done a conversion essay to acquire a degree. With some hard core insistence, you might be able to see a clinical psychologist as part of the initial assessment. This is the hardest thing, to get to see the people who can help. The GP will be able to pinpoint the consultants who specialise in neuro-diversity. Maybe push for that?
Every time they mention CBT, tell them NO. It will likely harm you and is not appropriate. It has harmed many with aspergers/autism diagnosis.
Have you sought out any online communities Aspergers/Autism?
Those with experience of this nightmare merry go 'round may have knowledge of ways to get a diagnosis.
There are plenty of people who are diagnosed as adults with conditions of neurological diversity who have no record of childhood assessment, input etc. Those who have assessed you are selling you short on this and brushing you off.
Having to kick arses when you are in the midst of this is exhausting, but there is no way around it. If you want to get the help, want to get a proper diagnosis, then you have to keep the arse kicking boots polished and ready to use.
If you can find a professional who is a suitable specialist, then it's always worth a punt to see if they would assess you for free. There is no law about contacting consultants directly, they all have secretaries. Some are more than happy to help someone who has been chasing diagnosis and help for a long time. Again, look at fora, see who is mentioned, find them, ask them.
Best of luck.
Thanks.
DeleteTo be clear, i don't think she was recommending them specificially for a diagnosis, but because they are the local provider of mental health services - at least initially. Though if they had to who they would refer you to i don't know, that's the problem. All roads lead to Positive Step, same from the GP as well as the CMHT (the people that did the diagnosis are part of the CMHT). It's basically PS or nothing.
You can be referred to the local CMHT bypassing Positive Step. You have to insist. The GP will huff and puff and make out it's impossible, but it isn't. The CMHT have two options on referral, after assessment/diagnosis - to put you through the behavioural (Positive Step and CBT bunkum) or the psychological route (psychotherapy and other delights) The terms are crude there, but that's straight out of the mouth of a duty CPN down there, who isn't part of PS.
DeleteWithout a diagnosis, it's unlikely you will get access to support for whatever you need it for.
Rejecting the standard model of referral is hard work, but it can be done. I did it, but ended up having to reject what they offered
by way of assessment as it was inappropriate to me and my problem.
They keep what's available and what's possible under tight wraps, you have to keep digging and fighting to get what you need. It turned out for me that any involvement with any of the MH services would do nothing but put me in an early grave, hence I have dropped all of it now and won't pursue it again.
The system is thoroughly offensive.
I really think that taking a look around the aspie/autism fora would help you find a route to getting what you need. If not, at least you tried.
No one provides a pathway for patients in MH. You have to learn the hard way, and that, alas, causes more harm generally.
THing is, i've been referred to the CMHT before. I asked the GP to do it and was seen by someone who was a bit useless. He did say though that they couldn't help because my circumstances weren't serious enough to merit their help. The GP himself doesn't know much more about mental health services than I do.
DeleteThe assessment was carried out by the local mental health partnership who would say they work with the CMHT - or at least the latter would say that the partnership is whom they would refer me to if i wanted a diagnosis.
In other words i suspect i'll be running around in circles because, aside from Positive Step (who are connected to ATOS as well), these are the only options. At least the only options I'm aware of.
Your experience is not unusual, but the squeaky wheel needs to squeak louder and persistently. Some have been chasing a diagnosis for 20+ yrs and then being offered an assessment by a nurse ffs.
ReplyDeleteTry finding a psychiatrist who specialises in conditions of neurodiversity and contact them directly, really plead your case, and make them understand your need for support via diagnosis.
It can take until a child is an adult to get Statements of Educational Special Need btw, it's a long walk on the treadmill.
But it is worth asking a clin'psych or a shrink directly for a free diagnostic session. There are a few who will do this from a place of integrity, not linked to cash, funding or tick boxes
But it all takes effort. Depends on how much you can put into it. The route isn't for the faint hearted.
ATOS own Positive Step.
Mustn't forget the double edged sword of being a squeaky wheel in the context of seeking diagnosis to evidence a benefit claim. If you are seen to be a little bit too together and driven in your actions, the DWP will pounce on that and kill your claim by whatever means they fancy. You need to play it carefully, diagnosis for you or diagnosis to get benefits, it's a very fine line to walk with MH people and the DWP.
Be careful that you don't come across as just seeking diagnosis for the sake of a claim.
I have no idea where i'd find a pyschiatrist beyond the NHS, if I asked my GP they'd tlel me that's the sort of people that have already seen me.
DeleteIt's all a bit of a catch 22.
I will have to wait and see what the outcome of the Work Psychologist talking to the clinician will be, not much I imagine. Benefits are the elephant in the room, but that's because people need to live! That's what frustrates me about NHS staff ignoring this issue: people have to live, what do they expect you to do?