I'm about to seek a referral

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Thanks, Millie......I see the jokes now, in fact I do recall 1 and 4 as an almost fully conscious attempt at humour. 2 and 3 were actually serious remarks, though I see the merit of them now in terms of black comedy.

Sorry to go off topic - just that it fascinates me why people laugh

Hmmm.......I may have scored a Pyrrhic victory - I just heard from a friend who works in the NHS and he reckons there's a significant chance that a NHS diagnostician would be politically motivated to deliver a negative result regardless of the patient's true condition. He said that without any prompting from me - I'd just said that I was amazed the funding was so easily available for the referral.

I first thought that it'll cost me nothing but a train ticket and a few hours of work and stress to find out, but there's a confounding factor - if I get declared "OK" by the NHS, then any subsequent private diagnosis might carry less weight than it would if the NHS DX had never taken place. It would at least create an unclear situation if and when I try to show my employers (or a court) that I have AS.

So I'm thinking I might be wise to go for a private DX quickly, and if it turns out positive, cancel the NHS one immediately. I suspect that rules out the type of private DX that requires a note from my GP, as getting that note will alert the NHS to the fact that I'm going private, so they can quite reasonably cancel my NHS DX before I get the private result - "why should we refer you when you're about to get your own diagnosis?" There are private diagnosticians who don't require any such contact with a GP, but I've always thought the ones who do require that might be the most trustworthy, as I suspect they do it because they want to be sure the patient isn't just a fool with money, and they don't wish to play the Harley Street game where hypochondriacs pay them a fortune to work on non-existent illnesses.

Of course if the NHS DX is a waste of time (and detrimental to my case), I may as well cancel it anyway, but I don't know for sure that they're politically motivated to return a negative result. I've thought long and hard over the best way to get to the truth about my true position on the spectrum, but it seems that in the end it's going to have to boil down to intuitive guesswork. Bah! I've done all this thoughtful groundwork and I feel no better off than a trusting imbecile who just takes pot luck and goes back to watching TV. Even buying stuff on Amazon is better than this - at least there are user ratings with large numbers of observations to discern the good sellers from the not so good.

I'm following your progress here with interest, ToughDiamond. I think we are in very similar situations. Best wishes!

Thanks, Ambivalence. I'll definitely keep reporting my experiences and my thinking - if I should die in combat, at least there's a chance that others won't walk into the same elephant trap.

It's like a big scary game of 3-dimensional chess, except that the players (me v. diagnosticians) aren't actually supposed to be on opposite sides, and I don't even know that we are. But life has taught me that where significant money is at stake, clandestine, competitive behaviour is a common feature in the players. Which is why people usually lock their doors when they go out.

Anyway, to continue my thinking, can anybody think of a reason why a private diagnostician should require a note from a GP, apart from the integrity thing I mentioned? Might there be a less wholesome motive for that?

I was badly let down by the NHS several years ago. After a few years of occasional, inconclusive psychiatric appointments, I eventually got a referral to a trainee psychologist who put me through the WAIS test and said there was nothing wrong with me. I have since read that it is very common for adults to be denied of an Asperger's diagnosis for years before they finally encounter a competent diagnostician. In many cases, they get misdiagnosed with other conditions. In my case, it was partial epilepsy, diagnosed without any referral to a neurologist and later overturned by a neurologist. I'm now trying to put pressure on my employer to pay for a private assessment by an acknowledged autism psychologist. I'm arguing that they have to do this under the Disability Discrimination Act because it is a necessary clarification of a DDA status for "mental impairment" awarded to me several years ago. Because the precise nature of my "mental impairment" was never clarified before, I was unable to sort out "reasonable adjustments". This assessment, therefore, is a key reasonable adjustment to lead to other reasonable adjustments when diagnosed. I have already had (and paid for) a preliminary consultation with this private psychologist and I have written to several disability and equality organisations asking them to lean on my employer in advance of legal consultation.

^
That's a sad story, RarePegs.....I hope you get the adjustments you need without having to start World War 3. It's the sheer lethargy and intransigence of employers and health professionals that always freshly shocks me when I hear about these cases. They seem to assume that if there's any doubt, they need to do nothing. I've read of cases where even a clear diagnosis of AS led to zero adjustment until legal action was mentioned. What happens to people who run out of energy to apply pressure, I shudder to think. But constant dripping wears away the hardest stone, eventually.

I've heard of people thinking they're to get a referral for AS, but all that happens when they get there is a quick questionnaire administered by a trainee, who then tells them they don't have it.

My father needed a hip replacement, but the NHS misdiagnosed it as "worn discs" and did very little to help him, until a bright physiotherapist happened to suspect that the DX was wrong. Until then he'd been following their advice to exercise, which was making it worse. The waiting list for the op was hideously long, and he spent months barely being able to sleep for the pain - NHS palliative care was a joke. In the end he got it done privately. He said it was very noticeable how the GP leaped into action the moment going private was mentioned. I wish there was some kind of system where serious misdiagnosis was put on the diagnosticians' record in the public domain.

I want people in the UK to be aware of the following:

"The duty to make adjustments is ongoing. If an adjustment has been made and this subsequently proves not to be effective in overcoming the disadvantage, then the employer must think again - they cannot just assume that, having made one adjustment, their duty to do so is discharged."

I got that from the Equality section of the Public and Commercial Services Union (PCS) website:

http://www.pcs.org.uk/en/equality/index.cfm

You will find other useful info there, including a comparison of the medical and social models of disability.

I'm thinking of submitting a Freedom of Information Request for the report from my visits to the trainee psychologist and possibly using it as evidence for a negligence claim against the NHS, following private diagnosis because I feel strongly that a message needs to be sent that they cannot get away with failure to diagnose, whether it was by incompetence or by a policy of restriction. If they think that they are economising by refusing diagnosis and the post-diagnostic costs, then we have to make it an obvious false economy for them to act like that.

^ I think many of them are already aware it is a false economy. All that seems to matter to NHS managers are short-term savings. After all, they can advance or move on to another PCT after a couple of years. This reminds me: One of the managers in my local PCT was fired after admitting their job consisted of BSing for a living.

It's good you are considering a negligence claim.

Does anybody think the NHS would be politically motivated to under-diagnose AS, or would the main danger be simple negligence? Just that I can't see how political motivation would operate, given that there's little or no NHS support for a diagnosed Aspie, so they wouldn't be saving money by under-diagnosing. I'd have though it was employers and DSS who would have a vested interest in ignoring Aspie impairments.

Since your local trust appears to have an out of area service agreement with the clinic doing the assessment, I don't see how it would benefit them, and especially the out of area clinic, to deliberately misdiagnose. If your trust really didn't want to have patients diagnosed, it would be a lot easier to just not arrange an out of area agreement. The main thing is to ensure the diagnosticians are experienced dealing with high-functioning adults.

great you have flared my pesimism now sad face. Iamtified of this asking for a referralprocess

great you have flared my pesimism now sad face. Iamtified of this asking for a referralprocess

I suspect you're right .......I'm hoping to play it safe and get a private DX first anyway, the kind that doesn't require a GP's note and doesn't send the result to the GP afterwards, so if after the private DX I feel I need a second opinion, the NHS one will still be in the pipeline, and I'll only have to pay one fee. I've just emailed the private diagnostician to check about the confidentiality of the result (no GP's note is required with that one) - I've pretty much ruled out 3 others - one wants over £1700 , another wants to DX me for every known mental condition under the sun, and the third isn't actually a psychologist so the legal validity of the result may be woolly. I don't think there's much more I can do in terms of pre-empting anticipated problems......it could still go wrong of course, but I guess nothing in life is certain.


Me too - I'm weary of trying to consider every possible thing that could go wrong. But don't let my Machiavellian thoughts put you off. More than likely there's no great conspiracy among health professionals to wreck my life or anybody else's. I'm the kind of guy who barely knows the meaning of the word "trust." Possible problems just occur to me whether I want them to or not, so I end up with a lot of bases to cover. And what's betting something completely unexpected will happen, like it did when I went to ask for the referral? Really I just want the whole DX thing to be over with, I've been in limbo for much too long. I think the groundwork is pretty much done now.

Well, I've finally set a date for a preliminary assessment for AS, with a private diagnostician. That session will be just to determine whether it's worth doing the DX proper.

Monday 29th June - one week's time in fact. Petrified already.

She says she won't divulge the result to anybody without my consent unless I turn out to be a danger to self and others....not much chance of that in my case - I'm pretty harmless even to myself.

I guess it depends mostly on whether or not she's able to make me feel at ease. She seems OK judging by her emails.

Well, I did the preliminary stage of the DX today, and the psychologist reckons I've almost certainly got AS........and no sign of anything else wrong with me so far, which is a relief. It was a one-hour interview, she asked me to talk about my jobs, hobbies and marriages, and after a sluggish start I was soon opening up about how it's all been. Nothing about childhood.

Luckily her "bedside manner" was at least adequate - she didn't come over as an authority figure, and somehow managed to keep me from talking past the point without cutting across what I was saying. I felt like a complete idiot for most of the time, but that's usually the case when I'm with a new person. Hopefully next time I'll feel more at ease. She reckons that the world of work and education really is getting more difficult for Aspies, with all the modern emphasis on group working, open plan workplaces and flexibility.

Next step is to fill in a couple of questionnaires - one of them looks like the AQ test but with different questions, the other requires longer answers. After that, I return with my wife for a 2-hour definitive assessment, then there's a 1-hour follow-up appointment to decide where we go from there - I guess if it's a positive DX, it might be mostly about how to tackle the employer over making adjustments. Relate is probably the place to try and sort out the marriage issues.

So far, so good.

Glad it went well .