Aspies For Freedom

You could tell them how it affects your life, and why you think its fair that you are diagnosed.
If you list all the criteria that you have, that still doesn't make it imperative that you actually need a dx.

They seem to want to spend money on dxing young children, and adults who were missed as kids get the brush off.
It seem common to have to go out of your area to get dx, or some even have to pay privately.

You could try involving PALS (Patient Advocacy and Liaison Service):

http://www.dh.gov.uk/PolicyAndGuidance/O...ices/fs/en

I'm new here, so just let you guys and gals know my expereices regarding diagnosis.

Firstly, my son has AS as well as a learning disability (mild) and epilepsy (now under control with meds). He's now 14. I'm 41, and married.

I have had two periods of being off work due to stress/anxiety/depression. It was put down to 'work issues'. However, earlier this year I was off again, and while off stumbled from a link on an unrealted discussion forum to Simon-Baron Cohen's 5o question test. I did it 'just for fun' and scored 44 out 50. I looked more into it, and contacted my GP, who was supportive. Howver, he couldn't find anyone to refer me to. I did some homework on the net, found a clinical psychologist, and asked the GP to refer me. However, said Psychologist said I was 'out of area' (I live in Cornwall, he's based in Devon). I contacted my Occuaptional Health Dept, who then, eventually, arranged for me to be seen privately.

Et, voila, I was diagnosed two weeks ago!

I find it incredible, though, that there are no NHS Psychologists able to diagnosis AS in adults in Cornwall. But having looked around here, it is obviously far from unique.

I will write to NAS to add my penny'orth.

tinminer, you're right about the lack of service provision.  There are huge gaps in provision right across the country.  I don't think this is coincidental.  There is service provision for children, access to diagnostic and therapeutic and support services for children and their parents.  But an almost total lack of provision for adults.  

I do think that the lack of provision relation to adults is because the Department of Health/Health Authorities don't want to open the floodgates in terms of adults.  If they provide a professional with expertise who is capable of diagnosing adults, then the 'spend' and pull on resources won't stop there.  If a person is 'diagnosed' with AS then they ought to receive access to other support services such as therapy for depression and comorbidities.  Such service provision is sorely lacking.  

If they acknowledged the existence of AS in the adults who are Aspie, they would have to assess and acknowledge their needs and make provision for them.  At this moment in time, I'm absolutely convinced it's a financial rationing issue.  I can't think of any other reason, given that there is service provision for children, for refusing to provide similar services for adults.

Yes, I think your right English Lulu about it being a rationed funding issue (i.e. more funding available to children end of the diagnosis).

However, in my experience after a diagnosis, there isn't much support whether you are an adult or a child, if my son's experience is anything to go by. We had to fight to get him into a school for children with moderate learning disabilities (and, therefore, lower class size). I don't care what anyone says inclusion into mainstream is NOT the answer, as additional help is woeful, and the supply/temporary teachers and helpers used are completely untrained in ASD.

Fortunately, the school he is now in is a much more calm teaching environment. Yes, bullying does occur (my son was bullied terribly at both Primary Schools he attended), but the School is more up front and pro-active, and nips incidents in the bud, before they get out of hand.

Presumably because doing otherwise would cost your local health authority money

Oh yes, this is a subject that concerns me as I would like to be able to find out one way or the other if my suspicions of having AS have any basis in reality, or whether or not I am "confabulating".

I noticed when I got a chance to look at some of my old records again, that a lot of information was missing, even though there were things that could indicate AS. I also remember things from when I was younger that are more indiciative though that 'evidence' probably is not admissible to a clinical setting.

I had a *very* atypical childhood in terms of schooling/education, family and other relations and I strongly suspect that I had delayed development in terms of walking and doing other physical things.

It might be necessary to go out of the area of your Health Trust catchment area, as health care in the UK seems to be based very much on a 'post code lottery', which means that the quality of services depends on where you live.

Well done Englishlulu.  :grin:

That is inspirational to me as I am stuck in a very similar position to the one you were infor so long - except that I unfortunately agreed to see the unqualified psychiatrists, who of course said I don't have AS... :roll:

I'm currently involved in a complaint against the local mental health service about this, backed by ICAS - it would be ever so helpful to me if you were willing to post the wording you used in your letter(s) - or did you do all this by word of mouth?

Wow.  Seems I was very lucky (or unlucky) to get diagnosed so easily ten years ago, when they didn't have the expensive tests and just sent a young German guy out to ask me a couple of questions.  Blam - 60 quid a week for life (or whatever it is.  I don't even know, that's how carefree it's made me.)

Brief update: two contradictory letters from Cabot Mental Health, the second one apologising and referring me to a newly formed Bristol Asperger Syndrome Service (BASS).  Six months later, BASS had its funding withdrawn by the NHS - just before I got to the top of the waiting list.

I'm awaiting privately organised diagnostic testing this coming Saturday.

And the result: yes, I do have Asperger's Syndrome.  "Quite unequivocal", the psychologist said about my diagnosis, "There's no doubt".

What a relief.

BTW, the University of Bristol paid for the test from their Access to Learning Fund (they treated it like a dyslexia diagnostic test) - it was the first time they'd done so, which creates a precedent which may be useful in future to other students in my position.