NHS- is the AS dx report important? ADOS- read yours?

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I am going through the diagnostic process at present, and wondered how important the statement thing tthy send to one's GP is?

i've been diagnosed with asperger's, and have been sent a provisional report on their findings to check over. its accurate, but I dont feel it gives a representation of the dificulties I have. in fact- the only thing it says is that I'm a bit untidy (understatement)- which doesnt really explain why I live as a recluse, cant work etc, or that I cant speak properly a lot of the time, and that i find even simple tasks hell to cope with.

so- how important is this report, now, and in the future? is this the way these reports all work? that is- it refers mostly to the ADOS tests, rather than giving what I'd consider to be a more accurate and rounded assessment of someone- ie, HOW their autism affects them?

will it affect the care I'm given? is it important to get everything written up in black and white?
they say there is basically no care they can offer me, and suggest I go to some groups.
I didnt want/need the speech therapist, social therapist and so on- but I do need someone to help me with normal living stuff.

i think the 'needs' assessment you seek is related to something called occupational therapy, in the uk at least but not entirely sure.. there are probably other assessments and support options too, but i think this deals with day-to-day living most directly.. presumably with dx of AS this occupational therapy should be fairly easy to get too.. sorry i couldn't clarify.
fudo

Can you state what services you require, and which therapist or service provider offers what you require? Perhaps the NHS is unable to pigeon-hole your needs within the services that they offer, and you are not identifying services that you need.

thanks to both.

but your questions are kind of what I'm asking- how does this report shape what care I will recieve afterwards?

once this report is finished, that's it- I'm on my own, i dont go back to this clinic.

so will any referrals be based on scrutiny of this report, or will other notes be considered?

stu- Im not even clear on how care is given- it could be through the NHS, it could be DSS- noone has told me anything.

fudo- no, I dont need OC therapy- just very basic assisted living.

since the report isnt finished, its really important that I get it right.
does anyone know if all subsequent care is based on what this says?? It really doesnt reflect how autism affects me, just 3d modelling, maths skills, short term memory etc. I dont really sound like I have much in the way of problems from it, which I actually do!!

if it's not too much information could you say what, specifically you need help with. very basic assisted living could, unless i'm missing something mean various things..
if for instance you could use support with shopping, cooking, filling out forms, attending appointments etc then perhaps supported accommodation could be suitable. but that may well be impractical, i'm frankly not the person i would ask.. no AS diagnosis and i can't get appropriate support myself. just saw this and thought i might have some small insight.
hopefully you find out what you want to know.
ps when i was briefly assessed for oc therapy it was looking at support needs similar to supported accommodation, that's why i thought it might be helpful. i have no other experience of it so am without much information.
good luck.

ha ha- thanks fudo.

to be honest, Im not entirely sure what I want help with- I need help with all you say, but then, I have such issues dealing with people that it would just create as many problems as it'd solve. I dont want to deal with anyone on a daily basis, or even weekly...

I did assume that, given a diagnosis, that one'd be pointed in the direction of care... that THEY would be able to recognise what you really need help with, and direct you toward it- rather than left rudderless like this. obviously, the very nature of a/s makes it hard for me to tell what the problems really are.. I tend to focus on one thing and am then unable to see anything else behind this one thing, which eclipses all else, regardless of its actual worth.. that make sense?? anyway- I dont feel Im always the best person to make decisions, and Id like some support, and options.
right now its basically- f off and join a group......... Im underwhealmed.

I know its all funding politics- that autism falls into learning disabib AND psychology, rather than having its own significant alotted cash- hence speech therapy being readily available (pre exisiting as care for learning disabilities etc), but more complex stuff not. its all wank, really.

anyone else care to chip in?

I'm not in the UK anymore so I'm not sure how helpful this will be, maybe just something to think about. My daughter got her diagnosis here in Sweden. The actual diagnosis papers themselves don't really give any information about any help she needs, in fact they sound pretty much like what you have. Once she had this diagnosis, the doctor referred her to an occupational therapist who has then looked into the specifics of the help she needs, such as coming round to the house and watching how she makes her bed, where it works, where it doesn't; how she prepares food; how she organises her time. It is the occupational therapist who drew up the action plan and is now in the process of teaching her coping techniques. Some of the needs that the therapist has highlighted will be met through social services and some through the special needs teacher at school. The occupational therapist co-ordinates all of this.

I don't think you should discount speech and occupational therapy, if this is what is available to you, without actually experiencing what they actually do.

It is my son's SLT and OT who have assessed his actual needs and worked out strategies to help him. The diagnosis was really only a statement of how he met the diagnostic criteria.

i think unfortunately the diagnosis, in and of itself is rather useless. AS is as far as i know a registered disability so DLA (disability living allowance) is essentially guaranteed, plus income support with the severe disablement premium.. money might not be an issue, ii don't know.
from experience, supported accommodation is pretty crap if you don't like dealing with people, however their aims are noble enough. encouraging independence.. etc.
one way of seeing what support is on offer is to go see the local psychiatrist, who should in theory assign a 'care co-ordinator' or jumped up social worker, to (again, in theory) assess the level of support required and help facilitate that.. tho in practice, one meeting with them and they'll get frustrated, label you unco-operative and pretty much stop trying to help.. maybe with a diagnosis of aspergers they'll be ready for communication difficulties however and perhaps this will help.
i've found that irrespective of who they work for, the most helpful people have been those i've gotten to know over time, a nice lady from connections or 'connexions' helped me far above and beyond career support.. i said basically 'look at me, am i ready to work? ' after getting to know her and she was very helpful. another person whose official remit was tenancy support helped me with all kinds of things from basic emotional support to meetings with my useless psychiatrist because as he put 'he wanted to help'
this information is perhaps useless, i don't know, once i start typing i kinda find it hard to stop unless/until something is resolved so forgive me if i'm not helping.
joining a group may well be helpful if only to enquire as to what support the other attendants receive, but i can appreciate it being a daunting prospect. especially to go alone the first time etc.
identifying needs with regard to basic living is something i've only really seen done by supported living staff, if you move into or apply for a place in supported accommodation or by the oc therapist i saw..
while you might not need the 'usual' occupational therapy they may well 'fit the bill' quite well, that is, they're usually referred by a psychiatrist so would surely be made aware of AS before meeting you and are ultimately tasked with providing, almost, whatever support is needed within very flexible timeframes.. at least this is what i was told by one such therapist. who subsequently refused to visit me after one visit because i took the word promise too literally and said i couldn't promise anything lol
if you have someone, a parent perhaps, that's know you very well and can explain your difficulties at all, take them to local psychiatrist and basically let them try to explain.. again i'm only speaking from my own experience. i sat there looking at all the electrical fixtures, stimming away, oblivious until questioned. (i personally really quite like questions, as long as they're not too vague) and from this they got a fairly good idea of my difficulties.. i would hope that such an explanation, followed by the question what support can you offer? and the refusal to take no for an answer, should result in a few services being offered.
the AS Dx should make it easier, they might not actually understand any better but the bureaucracy dictates that the more serious and or severe the problem on paper, the more likely you are to be offered support.. i've gotta stop lol otherwise i'll be here all night.. typing on a ps3 is a chore without a keyboard.
if the latter doesn't help, be british (assuming you are, apologies if not) and complain, perhaps using words like gross incompetence and discrimination for added effect..
again, good luck, sincerely. it is no kind of fun to know you need some help and that you're entitled to it but not receive it.
fudo

Don't expect them to identify your needs. Either from what they suggest (e.g. the speech or occupational therapy) or from services that you have seen and want, get yourself into regular out-patient care. Once you are in regular (preferably weekly) contact with any kind of professional, you will have many more opportunities for services.

I have had OT, various congnitive / behavioural therapy, art therapy, relaxation and anxiety management. I have been offered all of this through regular psychiatric follow-up - yes, we can all argue that ASD is not a psych issue, but that is the only adult access to any service, so use it.