2 March 2012

Waffle about my day - CPA, Aspergers, and a good old moan about NHS failings

This may be rambling and disorganised, but so is my head.
This whole Asperger's thing... forgive the cliché, but it's totally like I've been blundering around my whole life in complete darkness, and suddenly, the light has been switched on. (This is all in relation to me and my life; my neurological failings will always be there.) 
It's almost like a grief process but different, first awareness, then info gathering, then lightbulb and reprocessing, then relief, anger and (hopefully) acceptance. At the moment I'm a mixture of brain being overloaded from reprocessing and making sense of my life, and think tonight I made a shift from mainly relief, to mainly anger; and sadness. This was not a harmless mis-diagnosis, this was not a little failing of services; they're telling me there's a 'gap' in services for people with high functioning AS. I don't know about a 'gap' more like a bloody huge big gaping chasm!!! 
Had my CPA today - like an (at least) annual review kinda thing (that I've escaped for 22 months) - anyway, my psychiatrist was like, so you've probably got Asperger's... so what? The treatment option are the same... i.e. there is no specialist box they can tick to put me in, no specialist treatment centre they can put me in to 'fix' me, so it doesn't matter that I don't have an official diagnosis from an expert. When she said so what, and it doesn't make any difference; I was simply at a loss of what to do. I wanted to break down and scream at the top of my lungs words to the effect that it changes EVERYTHING!!!!!! By this point in time I'd already suffered 30 mins of sitting in there with people asking me stupid irrelevant questions (again) so I walked out, got a glass of cold water and stood by Mum's car. She (psychiatrist) is either too stupid to understand, or too arrogant to admit she might've made a mistake, and listen to me; and try and learn about AS (short for Asperger's - gunna use that from now on) in high functioning females like myself. Or she's just lazy, and can't be bothered to read a book or two to help her help me. I don't know, but I don't see any other option. She will refer me for an assessment; not at the specialist place, but at the local place that concentrates on diagnosing 'classic' adult men. And to even get an assessment; because she does not consider it urgent; is going to take .............. 18 months. 18 MONTHS?!!! Quite frankly at this point I'd rather not wait 18 minutes!! 18 days may be tolerable, 18 weeks, definitely not, but 18 MONTHS?!!!! See the bloody huge gaping chasm I was talking about earlier? The mental health services are lucky the physical ones aren't as hideously misguided; or else I would've died. Then they would be in... let's not go there, I can't think of anything to put that doesn't involve a high density of swearing and insult to all mh workers, some of which do do their job. 
So I'm rather down in the 'if only's' tonight, if only someone had turned on this light when I was younger, even if it was not until my life unraveled at 16; if only someone had had the insight I now do to female AS (which is not a great deal; getting a book tomorrow, and another one when I've finished reading that one). Not only could I have been saved from the physical pain and scars and deep trauma I've experienced for the past 5 years, from my own crappy coping mechanisms, and emotional shit the NHS have put me though (particularly a certain unit in Kent who specifically did a lot of damage) ; the NHS could have saved literally ... it's gotta be over a million quid by now. i.e. it would've been cheaper to employ a full time AS specialist than to pay for all the treatment I've received (physical and psychological) which I feel could've been prevented by being diagnosed earlier. 
Anyway, my social worker has agreed to read the book that I'm going to. She admits she's not a specialist, and I think she can see me in so much of the stuff I showed her from online research, she's willing to help me. I'm telling her what will help, and she's willing to do it, even though it's a bit unusual. Anyway what harm can reading a book related to your field of work do? (She says I remind her of her daughter; maybe she has AS too!) but anyway, please GOD don't let her be moved in this stupid government shake up.
Trying not to focus on the anger, and move towards acceptance and stuff, hopefully these books will help me do that. But equally, it's not wrong to feel it (so I've been told!) so there it is. I've just got to learn about and work with this to try and build a future for myself. I do take comfort i knowing I'm still loved by God; even if this world doesn't accept me, he does. But living with a logical science-orientated AS brain and being a born again Christian... that's a whole other post. or 10!!


Ok I'm tired now. That's my ramble for today, congrats and thank you if you've managed to follow that!!
Night all 
X

2 comments:

  1. Hi Emma, I saw your post on Aspergers Connect on FB and followed it back here... I'm (almost) 27 and had my lightbulb moment a month or so ago.

    Yet to really hit the anger phase, but I was very lucky growing up that my parents sort of instinctively did many of the right things to help me.

    I can recommend "Aspergirls" if you haven't already read it - great book and it is now like my bible!

    I have a 3.5 year old daughter (the reason for stumbling upon how AS presents in women, and then realising that it described me!) who is currently being diagnosed, and I am so glad I picked up on this before it impacted her life too negatively.

    Another thing - if you're open to the idea of chatting with her, I know that Tania Marshall (the owner of the clinic my daughter goes to) does meet with clients over Skype. I'm not sure about costings etc, but she's very well versed on AS in girls/women... might be worth contacting her (she's on FB)

    Erin

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  2. Hello Emma,
    I am Erin's Mum Janine. It's funny isn't it, I also found your blog on Aspergers Connect and upon reading a couple of your posts, thought to myself, "Erin should contact this girl". I read this post and noticed that someone had commented so I clicked (I'm a bit of a sticky beak ha ha) and fancy that, there was a comment from Erin! From a parents point of view, now that I know that Erin has AS, looking back I can see it was obvious if you knew what to look for. What makes it extremely difficult to spot is that AS presents so differently in girls than boys. We are only just beginning the journey of knowledge about AS ourselves. What we have noticed with Miss 3.5 (Erin's daughter)is a lot of the "quirks" sigularly are quite often "normal". It's only when you look at the whole picture you can see that Aspergirls are "different" to non Aspergirls. In saying that we don't mind a bit of qirky in our family and I don't know that I would change Erin in any way. I hope now that you have had this realisation your life improves immensely and you can access the best kind of therapy for you. As a Mum I really wish you peace whilst living a fantastic life. Good luck.

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