'You have to go private for diagnosis'

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Alycat
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24 Sep 2009, 12:50 am

I want to be diagnosed as Aspergers. More specifically, I want to know whether or not I have it, so that I can get on with my life. I went to the GP and she referred me on to one place, who then referred me on to another. The second place emailed my GP saying that they only see people who already have diagnosis, and that to be diagnosed I'd have to go private.
My GP has said she will give me a quote for this if it is a possibility that I can find the money, so I'm going to speak to my parents about it on the weekend. Apparently it will be a few hundred pounds.
It seems so wrong that one would have to pay for a diagnosis.


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TitusLucretiusCarus
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24 Sep 2009, 2:02 am

From what i can tell the NHS 'doesn't consider Asperger's in adults a priority'...at all. will you let me know what happens, I need a diagnosis at the very least for work.



Livia
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24 Sep 2009, 5:05 am

I've had a similar thing happen, whereby the NHS can't diagnose me fully, although they ARE treating me for my social anxiety, because, in this case, no one is fully qualified/has enough experience regarding autism to do so. But they want the 'official' (they know I have it to some degree) diagnosis so they can treat me properly. CBT works for only so long. :roll:

I'm actually being referred to a research centre that will assess me free of charge, but it takes up to three months to be seen, and is only for people in my region. Have you thought about contacting the National Autistic Society? That would be the first place I would recommend going. You shouldn't have to go private.



outlier
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24 Sep 2009, 11:04 am

It is wrong. I recommend dropping into your local Patient Advice and Liaison Services (PALS) to discuss the issue. You can find your local branch by searching here. They provide excellent advice on matters concerning the NHS, and when they took on my case, they did lots of calling around on my behalf. I also did not have to book an appointment.

Another option is to persuade your local Primary Care Trust to fund an assessment in a clinic out of area. This can be done via the NHS complaints procedure. PALS can advise on this option and your other rights. Also, the Citizens Advice Bureau outlines this procedure.

Another option is to ask your GP whether there is the option of her writing to a Single Patient Treatment Panel to get them to consider funding an assessment for you out of area.



Locustman
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24 Sep 2009, 11:13 am

TitusLucretiusCarus wrote:
From what i can tell the NHS 'doesn't consider Asperger's in adults a priority'...at all. will you let me know what happens, I need a diagnosis at the very least for work.


It certainly doesn't - even less so now that recession's hit and the cost-cutters are moving in.

I eventually did get a referral for diagnosis but I had to get through four different shrinks before I could find one thet would consent to it. When I actually got my diagnosis - based on an entire day's worth of interviews and evaluations - I was told "We're not in any doubt at all. Your case is absolutley typical".

So all I can advise is - don't give up. If one psychiatrist won't refer you, write a polite letter asking to be seen by a different one. Some of the other proceedures described above by Outlier sound worth looking into as well..


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outlier
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24 Sep 2009, 11:35 am

One useful document from which to quote when dealing with the NHS (and in particular if trying to obtain funding from your local Primary Care Trust) can be downloaded from here:

Department of Health, Better Services for People with an Autistic Spectrum Disorder- A Note Clarifying Current Government Policy and Describing Good Practice

Example quotes:

"Service provision should be determined and driven by a clear contractual framework and service specification with regard to ASD from PCTs and Local Authorities."

"Where specialist services are deemed to be unnecessary commissioners are expected to show that the needs of local people can be met by mainstream services."

In other words, your local NHS etc. is responsible for developing service provision for ASDs in accordance with government guidelines. If they have failed in this, you can question why. If they refuse specialist ASD services for you out of area, you can also inform them they are expected to show that your needs can be met by their mainstream services (which in this case is not possible due to lack of local autism expertise).


Such Department of Health documents, which outline best practice guidelines for the provision of autism-specific services, are based on legislation such as the Disability Discrimination Act and the Human Rights Act. This is another point you can raise.


There are more recommendations on services required for ASD by the Royal College of Psychiatrists, from which you can quote.



Alycat
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24 Sep 2009, 1:13 pm

My mum spoke to me today, and asked me why I wanted diagnosis. I tried my best to explain. She then said that, whilst she'd have to speak to my dad, she was fairly sure that they would pay for it.
It's annoying though, as we shouldn't HAVE to pay, but I'll live with it.


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Maggiedoll
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24 Sep 2009, 3:25 pm

Is there actually any help in your area for adults with AS?
:? You make it sound like just because a professional says something, it must be true. I've been diagnosed with some pretty stupid things in my lifetime, so I don't really take professional opinions to mean much. Last time I went for psychological testing they told me that if you see fire in a Rorschach, it means you're bad and disturbed, and that this is completely objective. They actually told me that a Rorschach is objective, and that how the results are interpreted has absolutely nothing to do with what those images mean to the person who sees them. So the fact that I saw a campfire means I have death and destruction on my mind all the time.
I do not have a high opinion of psychological testing.
If you've taken autism quotient tests, meet the diagnostic criteria, you read what people say on WP, you relate to it, you go "OMG, that's me!"... etc, can't you be just as certain that you at least have some type of PDD as if some idiot who managed to get a degree says so?
If you need the diagnosis in order to get appropriate treatment, that makes sense.. but it doesn't seem like there IS any treatment for AS in adults.



Alycat
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24 Sep 2009, 3:43 pm

Maggiedoll wrote:

If you've taken autism quotient tests, meet the diagnostic criteria, you read what people say on WP, you relate to it, you go "OMG, that's me!"... etc, can't you be just as certain that you at least have some type of PDD as if some idiot who managed to get a degree says so?
If you need the diagnosis in order to get appropriate treatment, that makes sense.. but it doesn't seem like there IS any treatment for AS in adults.
Yes, I have taken AQ tests, I meet the diagnostic criteria, I relate to posts on here, and others have told me I have it (including people on the spectrum and people who work with ASDs).
I would like to be able to tell a few people (such as a few of my bosses) and not be worried that I'm lying to them (as I may not have it). If I get a diagnosis then I will be able to do so.
There is some help in the area, and someone I know works for a local organisation. However, there isn't diagnosis (unless you pay)


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Maggiedoll
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24 Sep 2009, 4:03 pm

Ok, so the AQ tests say you have it, you meet the criteria, people on the spectrum and people who work with ASDs say that you have it, but yet it might be a lie for you to say that you have it?
And nobody ever gets diagnosed with things that they don't have anyway?
I think most of the adults on WP realized that they had AS precisely because nothing they've ever been diagnosed with before made any sense.
Not to mention that there are also some people here who have managed to get diagnosed despite not actually having it.



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24 Sep 2009, 4:23 pm

Maggiedoll wrote:

If you've taken autism quotient tests, meet the diagnostic criteria, you read what people say on WP, you relate to it, you go "OMG, that's me!"... etc, can't you be just as certain that you at least have some type of PDD as if some idiot who managed to get a degree says so?
If you need the diagnosis in order to get appropriate treatment, that makes sense.. but it doesn't seem like there IS any treatment for AS in adults.


what if you've met all of those, except for a few of the criteria? (perhaps some important ones)

btw does a diagnosis help in college? i'm still a junior in highschool....



Ambivalence
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24 Sep 2009, 4:27 pm

Maggiedoll wrote:
Last time I went for psychological testing they told me that if you see fire in a Rorschach, it means you're bad and disturbed, and that this is completely objective. They actually told me that a Rorschach is objective, and that how the results are interpreted has absolutely nothing to do with what those images mean to the person who sees them. So the fact that I saw a campfire means I have death and destruction on my mind all the time.
I do not have a high opinion of psychological testing.


I was deeply upset when I found out that the Rorshach is a standard test, with only a few static patterns. I thought it was randomly generated somehow (with an ink blot or something), that would be much more interesting. 8)

I have an appointment with a private specialist in two months time. I should first say that I find going to see my GP extremely difficult. I can barely speak or think when I go there, so putting any kind of "case" to him is difficult. :( When I first asked my GP (some time ago), he asked me if I wanted to see a counsellor (someone I'd been referred to previously about social anxiety and gender identity stuff) instead of seeing a specialist as "there weren't many, they mostly dealt with children and it would take a long time." I agreed - because I am not a pushy person at the best of times, and was heavily stressed out just by being there - and then didn't arrange to see the counsellor. Not the best thing I could do, but I guess that you lot understand. :roll: Anyway, more recently I got the courage to go and ask again, and he referred me, although I really had to push for it. Being an obvious nervous wreck by that point may have helped. :) :roll: He seemed surprised that I was willing to travel away from the area for it. ^^


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Maggiedoll
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24 Sep 2009, 6:35 pm

Ambivalence wrote:
I was deeply upset when I found out that the Rorshach is a standard test, with only a few static patterns. I thought it was randomly generated somehow (with an ink blot or something), that would be much more interesting. 8)

What upsets me more is that they think that somebody who has never met you can "figure you out" based on what you see in inkblots. I mean this literally. When I took a Rorchach, it was administered by a graduate student and the person who evaluated my results had never met me. Never so much as introduced herself or shook hands. Had absolutely no idea what anything meant to me. So they then proceeded to take my seeing a campfire (the safest place in the world for me) and stick it in the "death and dismemberment" category. And then insist that there was nothing subjective whatsoever about this entire process. :roll:

I see a psychiatrist now, that's it. I need meds, but really don't trust doctors to figure it out. It was really difficult when I moved from PA to MD, 'cause I had LOT of trouble finding a psychiatrist that didn't want to take me off of anything that helped and make me take antipsychotics.. despite the fact that there's no good reason I'd take them and when I've taken them in the past as sedatives the results have been disastrous. Of course, the psychiatrists now don't know much more than what their drug reps tell them.
Even my general psychiatrist isn't local, though. There wouldn't be anybody who knew anything about autism any closer than DC.. and I'm not sure if there's anyone there, either. :? Nothing else makes any sense, though. It's like, you go through every diagnosis there is, go through all kinds of treatment, and the few things that don't make it worse just don't do anything at all. I guess without a diagnosis I can't be sure I have AS, but I can be reasonably sure I have some sort of PDD. It actually explains my problems. It's not like being diagnosed means that somebody definitely has it anyway.



leejosepho
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24 Sep 2009, 7:58 pm

Alycat wrote:
I would like to be able to tell a few people (such as a few of my bosses) and not be worried that I'm lying to them (as I may not have it). If I get a diagnosis then I will be able to do so.


After taking the online tests and becoming quite convinced on my own, I printed a copy of this following page and handed it to my boss:
http://www.asperger-advice.com/asperger ... dults.html

He looked at it for a moment, smiled just a bit and commented about "inflexible thinking" ... then took it with him on back to his office.



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24 Sep 2009, 8:24 pm

There is no requirement to "go private" to get a diagnosis. Both I and my partner got diagnosed on the NHS. Your GP must forward you to a psychiatrist who can then forward you to a clinical psychologist or a neurologist.. and they DO have those on the NHS. Some GPs are just obstructive bastards who will do anything to avoid letting a patient be right. Sad state of affairs really.


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Alycat
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25 Sep 2009, 12:32 am

Macbeth wrote:
There is no requirement to "go private" to get a diagnosis. Both I and my partner got diagnosed on the NHS. Your GP must forward you to a psychiatrist who can then forward you to a clinical psychologist or a neurologist.. and they DO have those on the NHS. Some GPs are just obstructive bastards who will do anything to avoid letting a patient be right. Sad state of affairs really.


They did originally refer me (it was a disaster but it's a long story) and the people she referred me to referred me back to her, saying that they didn't diagnose. She then tried the Autism services, who said they'd only deal with people who already had diagnosis, and I'd have to go private if I wanted diagnosis. I don't think she knows anywhere else to refer me, or she probably would have.


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