Anybody had trouble getting a private diagnosis recognised?

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I just got this back from the NAS:

We do like to advise people that we have heard on some occasions that a private diagnosis is not always recognised - for example by local authorities such as social services

Any comments? I'm in the UK, by the way.

It seems quite a disturbing piece of news to me - especially as there's a rumour that the NHS may be politically motivated to under-diagnose AS. In effect it could make it impossible to get a legally watertight DX, as the private DX could be ignored and the NHS DX could be rigged to give a negative result.

Some local authorities will look for any excuse to refuse treatment/support, and this particular example would not be allowed to take place in the NHS at least, as far as I can tell, under government guidelines (see Dept. of Health website). I recommend checking with the Citizens Advice Bureau to be sure and to ask whether this applies to services besides the NHS, which I suspect it does (you don't need particular diagnoses to access some social support services). The services in a case such as this (private and NHS) are being delivered separately, so if treatment gets refused on such grounds, it should be challenged via the NHS complaints procedure.

I doubt the diagnosis rumour has much truth once you reach the stage of obtaining a referral to a clinic. Referrals to specialists are hard to obtain anyway and it is far easier for local authorities to prevent diagnosis by refusing to fund beyond the primary level than to operate politically on the level of individual clinics and specialists.

It is true as they aren't for example my dyslexia test was taken at my uni, its wise to keep the report sent and duplicaste it, in reference to the NHS under diagnosing AS that is somewhat disturbing if true jut frankly sick if you ask me I don't think its the case though as people in the UK have an easier time by how it looks in the UK than US just think it depends on the assessor to

Thanks, Outlier

I've asked the NAS for more details - I'll post anything I find out here, though they're currently taking about 20 days to reply......must be short staffed.

Now I come to think of it, I'm not aware of anything much that the social services would have, that Aspies might need.

The only things I was thinking of using a DX for (apart from confirmation of my suspicion that I have the condition) would be:

1. cognitive therapy on the NHS - provided the therapist was skilled enough to "reach" me (I'm one hell of an independent-minded guy, and balk at the slightest whiff of incompetence or patronising behaviour from health professionals)

2. tackling my employer to make adjustments to my job - I doubt the employer would be so unwise as to try to play down the weight of a properly-done private DX.

3. should the job fail, getting onto incapacity benefit or at least getting the DSS to refrain from trying to force me to look for ridiculously Aspie-unfriendly jobs - I do hope they wouldn't use their own quacks to rubbish the DX, though back in the 1980s I saw them do that to a lady with an injured hand even when the NHS GP had declared the person incapacitated. The poor patient kept getting bounced between the GP and the DSS quack, with the benefits going on and off like a Belisha beacon ......the quack's political bias was pretty obvious, and he also insisted on doing a full body examination on the (female) patient. But I doubt they'd have anybody on their payroll who was specialised enough to make pronouncements about AS.

Point taken about the NHS under-diagnosis rumour........I'm still wondering about whether to cancel the NHS referral or not, should the private one turn out positive - I'll have to ask how strongly positive the latter is, when I get it, because if it's not far above the borderline, then the NHS diagnosis could quite innocently turn out just below the borderline, which would of course weaken my case - and unlike the private DX, the NHS one would be on my record.

Well, as you'll probably have gathered, the NHS under-diagnosis rumour doesn't look as if it's likely to be true. Logically, why would they go to the trouble (and the risk) of rigging the DX, when they can take the much easier route of failing to get the funding?

What do you mean by "private diagnosis?"

Here in America, all doctor/patient sessions are "private." I don't think you need a diagnosis from a doctor working for a public/state-funded agency, but any diagnosis (from any doctor) can be challenged and the disputing party can insist on what is called an "independent evaluation" which involved bringing in a new doctor that both sides will accept to be a neutral party. The idea being that YOUR doctor might have been selected because he was inclined to give you the diagnosis you sought rather than honestly evaluate you.

It's a bit insulting to the doctor in question, but it happens all the time. Ultimately, for the right amount of money (or for personal biases) it's not hard to find a doctor or other "expert" who will sign an affidavit to whatever you want them to attest to.

Remember this magical phrase: "This will make me more productive." If something is reasonable and you can prove how you will be working much better afterward, many employers will make allowances.

I'm in the UK. Here, there are two kinds:

1. the National Health Service type - the patient asks his/her NHS General Practitioner for a referral to a specialist. If the doctor agrees and funding is available, the GP or the NHS normally selects the diagnostician and, usually after something of a wait, the patient receives an appointment for the diagnosis, for which there is no charge. As the patient has little or no hand in the selection process, there is no capacity to cheat.

2. the private type - the patient approaches the diagnostician of his/her choice and pays them to perform the diagnosis. I made my choice from lists supplied by the National Autistic Society which contain brief details of the diagnostic method used (ADOS, DISCO, ICD-10, etc.) and professional qualifications. Some private diagnosticians require a letter from the patient's GP, some don't. It would seem unlikely that such a private diagnostician would be so unscrupulous as to give the patient the result of their choice, as they are bound by governing bodies and the NAS presumably also requires some criterion of fair clinical practice as a condition of inclusion on their list. Naturally, any diagnostician who offered a "bent" diagnosis to a member of the public would be risking exposure and the loss of his/her license to practise, so I presume that cheating is pretty rare. Many diagnosticians, including the one I selected, do both private and NHS work.



I suspect that things are more tightly regulated in the UK. Certainly if I wanted a "bent" diagnosis, I would have a hard time finding anybody who would be prepared to do that for me.

Of course, for AS, the diagnostic criteria rely very heavily on the client's account of their life experiences, so in principle it would be feasible for an unscrupulous client to fake the condition - this would be equally feasible for a private or NHS diagnosis. But corroborative evidence is also required from a partner or parent, and the diagnostician would no doubt also be looking for physical signs, so all in all it would take quite an effort for the client to convincingly fake the condition. The diagnostic protocols are not in the public domain as far as I know, only brief outlines of the criteria.

It would also seem hard to fathom why a neurotypical would want to fake AS - I would imagine that an "Aspie-friendly" working environment would be downright boring to an NT.

I was thinking of something along the lines of "you clowns don't realise how much more I could be doing for you if only you started treating me like a real person instead of a number in a book." But yours is more diplomatic. Trouble is, I'm probably going to open the bidding with a request (or a declared intention if I'm feeling confident enough) to stop doing a particular part of the job - a part that was foisted onto me some years ago and ratcheted up in intensity every year since. It has all the hallmarks of Aspie hell - unclear instructions, compulsory teamwork, multi-tasking, bullying culture, the need to rush in a cramped, crowded environment, constant changes to the remit, interruptions galore, a long working day, irregular and unreliable rest break times, new people to work with, zero scope for perfectionism (the deadlines are so tight that there just isn't time for anything but a half-assed result). Imagine my bitterness after over a decade of that for 3 months a year, when it was never in my original job description. I'll try hard to stay mindful of talking positive to them about it, but it might have to be limited to veiling my threats. But perhaps my mood will mellow if I get that DX. I honestly think it'll scare them.

I am in the UK and am in a situation where I am trying to get a diagnosis. I've approached my GP and trying to get a referral though I'm not finding it easy. I have heard that there are not many specialists in my area and he does not seem very well connected with them. I have also had a recommendation of a doctor who can give a good private diagnosis. For me, this is probably an option - though I don't know how much money is involved at the moment. I had also heard similar rumours that private diagnoses are sometimes not taken as seriously. I think I'd prefer to go via the NHS but in the end either option is possible as I have decided that getting a diagnosis is an important step in me coming to terms with who I am and hopefully moving on in my life.

Ironically, I disagree. The NHS doctor is likely inclined to rule in the favor of what the state sees as it's own best interest. Here in America, you would be unwise to trust any doctor your employer or a state agency selects to evaluate a condition you claim to have. Just as you would want a doctor that is favorable to seeing your alleged condition as real, their doctors may be selected because they will downplay the findings as to be favorable to the person(s) who hired them. This is why diagnosis procedures are often challenged and require an IME (independent medical examination) before either side make concessions in a dispute.

It's not as much a matter of a doctor being on the take as it's a matter that all "professionals" have biases and medicine/psychology is more art than objective science...leaving room for differences of professional opinion.

You have my utmost sympathy over your plight, as it's clearly very closely related to what I'm going through, wondering about how to get a fair diagnosis. I guess a key question for you is, how urgent is the DX? In my case, my employers are about to increase their expectations of me in a very Aspie-unfriendly part of my job, and I've seen how ruthless and unsympathetic they can be to anybody who balks at their expectations - they bullied one guy out of his job, right before my eyes, and the union proved toothless. So I have an urgent need for proof that my disability is the reason why I can't meet their demands.

I suppose your need to come to terms with who you are is very important to you, indeed I too have a strong wish to know myself, but as I'm already pretty sure I've got the condition, I'm already beginning to move on - so many confusing things make sense in the light of my new Aspie awareness. When I look back, I seem to have intuitively arrived at varous coping strategies without realising what I was doing. Nonetheless, the moment the psychologist said "I'm pretty sure you've got it" felt like a huge step had just been taken in the validation of my suspicions, though the news saddened me as well.



By "capacity to cheat," I meant "capacity for the patient to cheat." The NHS certainly shouldn't be trusted too readily, but as I said earlier, (havng chewed over Outlier's advice):

Working out who can be trusted and who can't be is one of the most difficult parts of this diagnosis business. Ultimately risks have to be taken.

Hi. I live in the UK, and have a private diagnosis of AS. This came with a twenty-odd page report detailing my symptoms etc. I tried claiming Employment Support Allowance a few months back (this is a benefit payment for disabilities,) for this you have to be interviewed by one of their assessors. This person didn't want to look at my report, she only asked if it was from the NHS. I said no, and that was the end of it. I was refused the benefit, though I'm appealing the decision (according to this assessor, AS doesn't cause social problems) and I think I'll succeed - I've had help putting a portfolio together. The Citizen's Advice Bureau in Milton Keynes is very good.

Thanks for the info.......I see the benefits people haven't changed much
I hope your appeal succeeds - I agree you're very likely to succeed if you persevere. They seem to work like that.....initially they'll find any excuse to deny people their entitlements, but ultimately they back down if the client has the energy to kick up a stink. I don't know how some of their assessors can sleep, knowing the hardship and suffering they wreak with their meanness. May they rot! A UK diagnosis conducted by a qualified health professional should be accepted as correct, by all known standards of ethics and logic, unless there's hard evidence of fraud. Let us know how it turns out - I hope you rub their faces in it good and proper. What angers me so much is that there must be lots of genuine cases out there who just aren't strong or educated enough to press their case. And even the one who do appeal have to suffer a delay before they get what they were entitled to from Day One, with no interest accrued or compensation. But the bureaucrats don't give a damn.

PS: I've also heard of a Disability Living Allowance that Aspies can claim. Not sure what the difference is, but private diagnosticians have been known to help their clients with the forms for that benefit. The client in question was unable to work due to heightened social anxiety and an inability to cope with the process of finding a job with a sympathetic employer.

In my case, I am luck to have a job that is quite suitable for me - though my AS does limit my ability to perform in some area, on the whole my employer is quite fair - at the moment at least. I think my desire for a DX is as much for my own understanding of who I am, as well as to help my family and friends understand my problems. While my parents already strongly suspect I have AS - we have talked about it a little (though I don't find that easy), I feel very isolated from my older brother and sister. My brother particularly seems to have great difficulty making sense of me! So, while a private diagnosis would probably be suitable for me - I don't want to go through the odeal of having a DX, only to find that it is not officially recognised in certain circumstances - which seems a thoroughly saddening and demoralising thing.

Yes, my job is also apparently one of the best there is for Aspies and for the disabled in general, as the top brass is proud of its non-discriminatory credentials. Whether that's due to sentiment, funding opportunities or legal requirements, I don't know. The strange thing is, I drifted into it before I ever suspected I had any disability at all. But sadly, the world of work has become tougher for undiagnosed Aspies. Workplaces are now a lot more open-plan, and teamwork is the buzzword, hot-desking is all the rage. And sadly, line managers are not always as well-versed in political correctness as the top brass, to say the least.

It's a good sign that your parents think you probably have AS - so many of them just go straight into denial because they can't face the idea of their offspring being "abnormal." My parents are dead and my only significant surviving relative is my sister, who seemed initially scared of the idea that I may have AS, though I think she's coming round gradually. It must be a lot for anybody to take on board......I think a person has to be fascinated with psychology, otherwise it's just a plethora of unrelated traits.

My friends, such as they are, don't seem very interested so far. One in particular showed a bit of interest but has a nasty habit of ranting about the need for people to be flexible Another tells me that he thinks there's "nothing in it" - I feared we would soon fall out as a result of his apparent denial, but he seems to have a strong ability to accept people for who they are - in fact I suspect he has a number of Aspie traits himself, and can't see my differences because of the overlap in our respective personalities. And he's a refreshingly tolerant guy. Ironically, my wife, who was the one who first told me she thought I may have AS, is now intending to move to London. She's given various reasons that make little sense to me, and I think that really she's throwing in the towel because she's lost all hope of "reforming" my behaviour to match her preferences, on account of AS being hard-wired.

I wouldn't worry too much about a private diagnosis not being officially recognised - true, it's not the cast-iron guarantee of recognition I once thought it would be, but I doubt if that many authorities would try to fly in its face, and it's doubtful that those who do would be able to hold out indefinitely against a determined client who marshalls a well thought out defense. It seems to me that these deniers are mostly just clutching at straws. But it's very sad that we have to fight tooth and claw to secure recognition of our disabled status. We shouldn't have the burden of having to stand up for our rights, but it's a dirty world and we have to.