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Refused diagnosis. What can I do?

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CrazyCatLord
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24 Jan 2012, 4:45 am

GuyTypingOnComputer wrote:
I had a similar experience with a doctor who told me that his practice involved prescribing medicine and, since there was no medicine for Asperger's, there was no need to even explore that avenue.

The primary way most doctors resolve medical/mental problems is to treat the symptoms. For psychological/neurological issues, this can be a real disservice to the patient. As a patient who is more interested in identifying and dealing with the source of my problems, I have long been frustrated with doctors.


Quoted for truth.

On top of that, some doctors are simply arrogant and might get annoyed when people diagnose themselves. I'm not saying that someone would be so petty to disagree with the patient out of principle, but a self-diagnosis might cause a certain bias towards other conditions that also fit some of the symptoms.



CrazyCatLord
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24 Jan 2012, 4:50 am

You could contact your health insurance. They might be able to point you to a doctor or a clinic that specializes in autism and AS diagnostics.



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24 Jan 2012, 5:46 am

CrazyCatLord wrote:
You could contact your health insurance. They might be able to point you to a doctor or a clinic that specializes in autism and AS diagnostics.


Definitely this -> the psychiatrists ive seen are hell bent on prescribing medication. When I asked one about AS, he said he didn't know much about it, but I didn't have it (WTF?)

Went to see a clinical psychologist for a diagnosis (to find out either way) and got a much better result - someone that actually knows what AS is and how it manifests differently in people.

I think psychiatrists are nut cases out on a prescribing power trip........



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24 Jan 2012, 6:23 am

CrazyCatLord wrote:
You could contact your health insurance. They might be able to point you to a doctor or a clinic that specializes in autism and AS diagnostics.


This is the UK. Most people don't have private medical insurance, which is the only route to "pick and choose" who one wishes to see.

For those that don't know how it works here:

You have are registered with a GP surgery, of which there can be some choice, but you are limited by what the catchment area is. Generally this works out at only one choice.

You don't usually get to choose which GP you see on a visit (unless you beg) because appointments are handled by the reception staff on their terms, not yours.

If the GP assesses you have a mental health issue other than depression they will then refer you to your local mental health team. This will be a specialist team usually headed by a psychiatrist who will make the initial assessment after one or two sessions. It is this person who must be convinced of what you may have/need and who will then pass you on to perhaps more specialised individuals or services. It is important to stress that you do not get a choice of whom to see or where to go - there is no shopping around in this system. You are at the mercy of 1 person.



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24 Jan 2012, 7:09 am

Don't forget mental health professionals in the UK know everything [/sarcasm]

The training that a mental health professional has on autism/ADHD/Tourettes etc is basically a three sentence summary in the back of a gigantic mental health journal, however they have this bizarre belief that they know everything about autism/ADHD/Tourettes and that if they say you don't have it, you don't. I fought for over 8 years to get a referral to a professional at the Maudsley hospital in London. I was 18, nearly 19 years old and they took me on as a special case because they don't normally deal with 19 year olds. They diagnosed me with Asperger syndrome, Tourette syndrome, OCD, depression and possible ADHD (this has since been confirmed). They wrote a letter reccomending the correct treatments and help I should get as a result of my diagnoses. The psychiatrist ignored it completely... well apart from the medication bit, then decided that he would much rather categorise me as Borderline Personality Disorder. I've done my research about BPD and it REALLY doesn't fit me at all. The symptoms that he was describing all fitted into my other diagnoses that I had been given. I was diagnosed at 19 and now I am 23, coming up to 24. I still have yet to get any help from anyone...


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24 Jan 2012, 7:13 am

yup, some doctors don't like people to challenge their "authority." But they don't live in our bodies and in our heads. I will only work with doctors who will work with me. I felt like I was getting nowhere with my previous psychiatrist so when I met a new one through a clinical trial I participated in I asked him if he would take me on as a patient. He's willing to work with me, but first I had to be willing to work with him. I didn't go into my first appointment with him and say "I want testing for Asperger's." I hadn't been sleeping well and my anxiety was still an issue. Those things are easier to fix than the problems I have that may be attributable to AS so we worked on those first. At that first appointment I did tell him the trouble I was having with school and together we agreed to work on the sleep and anxiety first because they could be playing a roll in those problems. After two months it was clear things were not getting better so my doctor then said he'd order neuropsych testing. I think it is very important to rule out other more easily treated possibilities first.

A partnership is a two way street. A doctor can't do everything a patient wants them to do if they did then there wouldn't be a point in having doctors.


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arnoldism
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24 Jan 2012, 7:38 am

I believe there was a law passed in the UK which states that clear diagnosis and help must be available

http://en.wikipedia.org/wiki/Autism_Act_2009

quote the law and say you'll press charges for neglect etc, but I'd get a better person to speak to first anyway, maybe ask a doctor for a better referral,



nemorosa
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24 Jan 2012, 7:57 am

arnoldism wrote:
I believe there was a law passed in the UK which states that clear diagnosis and help must be available

http://en.wikipedia.org/wiki/Autism_Act_2009

quote the law and say you'll press charges for neglect etc, but I'd get a better person to speak to first anyway, maybe ask a doctor for a better referral,


Much of that act is intended for the provision of services for those already diagnosed. Doctors usually cannot give "a better referrel" because 1) that would imply that whomever you saw first wasn't up to scratch, and that just won't happen in the NHS and 2) there isn't any choice anyhow.



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24 Jan 2012, 9:23 am

nemorosa wrote:
arnoldism wrote:
I believe there was a law passed in the UK which states that clear diagnosis and help must be available

http://en.wikipedia.org/wiki/Autism_Act_2009

quote the law and say you'll press charges for neglect etc, but I'd get a better person to speak to first anyway, maybe ask a doctor for a better referral,


Much of that act is intended for the provision of services for those already diagnosed. Doctors usually cannot give "a better referrel" because 1) that would imply that whomever you saw first wasn't up to scratch, and that just won't happen in the NHS and 2) there isn't any choice anyhow.


That would be brilliant if it was working. They are obviously not enforcing it yet.


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arnoldism
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24 Jan 2012, 9:24 am

Quoting The National Autistic Society. Personally I disagree with their beliefs on what autism actually is but they are helpful in ways


> There are two routes to gaining a diagnostic assessment.
> You can go through the NHS, for which you will need a referral from your GP to see a diagnostician. Alternatively you can pay to go privately, for which you will not always need a referral. The cost of a private diagnosis can vary from £100 to over £1000.
>
> It is important that the diagnostician has experience of autism spectrum disorders. Details of diagnostic services can be found on our directory: www.autismdirectory.org.uk. We can help you to search for services but you would need to provide us with your postcode.
>
> Please see the following link for information about diagnosis and the benefits of getting one:
> www.autism.org.uk/About-autism/All-abou ... dults.aspx <http://www.autism.org.uk/About-autism/All-about-diagnosis/Diagnosis-the-process-for-adults.aspx>
> www.autism.org.uk/about-autism/all-abou ... adult.aspx <http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-the-process-for-adults/diagnosis-how-can-it-benefit-me-as-an-adult.aspx>
>
> The AQ test was developed by a team of psychologists to measure autistic traits in adults. It is not a means of diagnosis but may indicate the need for further assessment. If the results are significant it is also worth taking it along to the GP. The test can be taken at the link below:
> www.wired.com/wired/archive/9.12/aqtest.html <http://www.wired.com/wired/archive/9.12/aqtest.html>
>
> It can help to pass on the following information to the health professionals when seeking a diagnosis:
> www.autism.org.uk/Working-with/Health/I ... oners.aspx <http://www.autism.org.uk/Working-with/Health/Information-for-general-practitioners.aspx>
>
>
> The Autism Act 2009 led to the publication of some statutory guidance in December last year. One of the guidelines is that local authorities must have a clear pathway of diagnosis for adults.
>
> The guidance is quite recent, so local authorities are not expected to have something in place already, but they do need to be thinking about it, and if there is nothing local they need to consider referring you further afield.
>
>
>
> Please see the links below about the Autism Act and statutory guidance:
>
> www.autism.org.uk/en-gb/working-with/au ... -2009.aspx <http://www.autism.org.uk/en-gb/working-with/autism-strategy/the-autism-strategy-an-overview/autism-act-2009.aspx> - overview
>
> www.autism.org.uk/working-with/autism-s ... ategy.aspx <http://www.autism.org.uk/working-with/autism-strategy/the-autism-strategy-an-overview/adult-autism-strategy.aspx> - key actions
>
> www.autism.org.uk/working-with/autism-s ... dance.aspx <http://www.autism.org.uk/working-with/autism-strategy/the-autism-strategy-an-overview/statutory-guidance.aspx> - statutory guidance
>
>
>
> The link below is for adults with autism or Asperger syndrome, or who think they might. It has information about many subjects, including websites, forums and useful resources, so you might find it useful:
>
> www.autism.org.uk/living-with-autism/ad ... drome.aspx <http://www.autism.org.uk/living-with-autism/adults-with-autism-or-asperger-syndrome.aspx>



AardvarkGoodSwimmer
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24 Jan 2012, 5:43 pm

Jellybean wrote:
Don't forget mental health professionals in the UK know everything [/sarcasm]

The training that a mental health professional has on autism/ADHD/Tourettes etc is basically a three sentence summary in the back of a gigantic mental health journal, however they have this bizarre belief that they know everything about autism/ADHD/Tourettes and that if they say you don't have it, you don't. I fought for over 8 years to get a referral to a professional at the Maudsley hospital in London. I was 18, nearly 19 years old and they took me on as a special case because they don't normally deal with 19 year olds. They diagnosed me with Asperger syndrome, Tourette syndrome, OCD, depression and possible ADHD (this has since been confirmed). They wrote a letter reccomending the correct treatments and help I should get as a result of my diagnoses. The psychiatrist ignored it completely... well apart from the medication bit, then decided that he would much rather categorise me as Borderline Personality Disorder. I've done my research about BPD and it REALLY doesn't fit me at all. The symptoms that he was describing all fitted into my other diagnoses that I had been given. I was diagnosed at 19 and now I am 23, coming up to 24. I still have yet to get any help from anyone...

Wow, I'm sorry you're having such a hard time getting help.

I also sometimes struggle with both OCD and depression. (And will sometimes find myself talking to myself during long walks unless I'm careful not, and will stim privately, but I don't think either one of these are Tourettes)

I understand SSRIs can help with both OCD and depression. And ideally both the person and doctor should be patient as first medication may not work (and obviously, practice can be quite a bit different from this ideal!)

I've had some luck "dancing" an OCD worry so to speak. I will gently try and bring myself to a point where I believe and it feels okay to do a precaution and okay not to do a precaution. Then I ask myself, okay, which do I prefer to do. (This sometimes works, but sometimes doesn't.)

And I really think eventually Asperger's / Autism Spectrum will need to more follow the model of a civil rights movement, when 70% of it is organizations we build which provide self-help and self-advocacy, and 30% is good-hearted professionals helping out.



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01 Feb 2012, 2:10 pm

What keeps coming up in the wrong planet discussions is the nonsense that supposedly trained professionals hold to be true about autism spectrum disorders:

ie- if you
have had a friend .
or a close relationship
can demonstrate theory of mind
can make jokes
able to do eye contact
had a job
had children

....any of this and you can't possibly have anything to do with aspergers or asd!

I have lost count of the diagnosed people that I've read about that have done most of the list up there. One moving discussion I watched on you tube was from the wife of a Nobel prize winner for economics (can't remember name) - her husband was diagnosed +60 yrs and they had a great relationship. He loved his job... didn't enjoy socialising in large groups or noise that much, but he could teach and have loving relationships with people.

There is such a lag behind reality from the supposed experts, it is not surprising that the general public doesn't know much....!

Having said that, France has been allowing the followers of Lacan and psychoanalysis to run things - but at least the lack of understanding is obvious...

....in the UK, the lack of help is shocking too..


- I realise I need to get involved in some activism here in the UK !



:nemo:



Peter_L
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02 Feb 2012, 6:42 am

Vanis wrote:
I'm in the UK and I recently had a first appointment with a psychiatrist. He asked me a lot of questions with the focus being on bipolar disorder. When I asked him if there would be any differential diagnosis, particularly Asperger's or ADD, he told me that we would just be focusing on bipolar. I asked him why and he said Asperger's and ADD aren't recognised as actual conditions.

I pushed the issue further and he said that it would be "pointless" to get a diagnosis of either condition because there's no support available in the local area. This annoyed me a little because, as I said to him, I know of lots of support in my local area and on the Internet, even if it's just talking to other people going through the same thing. I mentioned a support group half an hour away from where I live and he just looked at me and said something along the lines of "surely it would be inconvenient to have to travel to get support" to which I replied that I would gladly travel much, much further to finally get some relevant support.

The conclusion was that I would complete a mood diary for a month, then begin medication for bipolar disorder. Is there anything I can do? I went to the psychiatrist to try to find some answers, not to be given random medication for a condition I probably don't have. I've been depressed for seven bloody years! It's clear to me that this isn't random, because every single time I've had a depressed "episode", it's been because I didn't understand some aspect of the world around me; the outcome didn't match my intentions or actions, or the behaviour of others didn't make logical sense to me or fit into my "unreasonably" high moral standards. I don't need medication. I need instruction. And I need it soon.


Having read through the thread, there is one incredibly simple thing you can do which has not been suggested.

Ask for a second opinion. They actually have to provide one. Frankly, in this sort of case I think you'd actually better write to the local NHS trust. Ask for the second opinion in writing, and state that you are only doing so since the doctor you are seeing told you that:-

A) A condition recognised in the DSM does not exist. (incompetent)
B) There is no point diagnosing you for any form of high functioning autism since there is no local support (inconsistent)
C) He can prescribe drugs for Bipolar and cannot for Autism. (putting you on mind altering drugs BECAUSE HE CAN and not based on patient needs! ; incompetent; dangerous!)

They will actually have to deal with that, since firstly you have a right to a second opinion and secondly it sounds like a case of someone who should not be practising in mental health!

You can also threaten to take it to the General Medical Council if your concerns are not addressed. That's sort of like threatening to nuke them though, so I wouldn't do that unless you need to.



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06 Feb 2012, 5:31 pm

Vanis wrote:
I'm in the UK and I recently had a first appointment with a psychiatrist. He asked me a lot of questions with the focus being on bipolar disorder. When I asked him if there would be any differential diagnosis, particularly Asperger's or ADD, he told me that we would just be focusing on bipolar. I asked him why and he said Asperger's and ADD aren't recognised as actual conditions.

I pushed the issue further and he said that it would be "pointless" to get a diagnosis of either condition because there's no support available in the local area. This annoyed me a little because, as I said to him, I know of lots of support in my local area and on the Internet, even if it's just talking to other people going through the same thing. I mentioned a support group half an hour away from where I live and he just looked at me and said something along the lines of "surely it would be inconvenient to have to travel to get support" to which I replied that I would gladly travel much, much further to finally get some relevant support.

The conclusion was that I would complete a mood diary for a month, then begin medication for bipolar disorder. Is there anything I can do? I went to the psychiatrist to try to find some answers, not to be given random medication for a condition I probably don't have. I've been depressed for seven bloody years! It's clear to me that this isn't random, because every single time I've had a depressed "episode", it's been because I didn't understand some aspect of the world around me; the outcome didn't match my intentions or actions, or the behaviour of others didn't make logical sense to me or fit into my "unreasonably" high moral standards. I don't need medication. I need instruction. And I need it soon.


I had a similar experience once. As others have said, don't take the medication. Chances are, it'll just give you even more problems for these fake doctors to pretend to treat.

It makes me sick just thinking about the kind of mindless scum that are allowed to become doctors. As long as you can recite a short list of currently popular treatments, you get the job. The belief that a doctor should have the mental capacity to actually think about whether or not a specific treatment is appropriate for a specific individual, is a completely alien concept.



psych
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06 Feb 2012, 6:06 pm

when i first broached the subject of aspergers with a psychiatrist (after several years of being registered with the mental health team) he said something to the effect that he used to work with aspergers/autistic children and he would be able to tell if i had it, he then said i couldnt have carpal tunnel syndrome either because my hands were not clawed up (iyswim) i cant remember what else was said, i suppose i argued my point further (having done significant research myself and feeling quite sure of myself) and he got upset and threatened to pull strings to have my benefits cancelled, then he told me to wait and left the room.

After a few minutes he returned with the consultant psychiatrist, we had a calmer discussion for a while, and the consultant suggested to the first psychiatrist that i wasnt being intentionally difficult and it was just the way i talked. Since then all my appointments have been with the consultant and we get on very well. No pressure to take medication. Hes been unable to fund a referral to the autism clinic unfortunately, this may partly because of a postcode technicality; my GP is based in a different london borough to where i live.



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06 Feb 2012, 7:02 pm

Sorry if I've missed something out here, but how did you get to that situation in the first place? Stay away from that psychiatrist. He's an idiot. If you want to be tested for AS then go to your doctor and specifically mention AS. That's what I've done. My doctor referred me to that specific department. This might be different for you, but in my case, I was sent to a mental health nurse who asked me lots of questions to rule out the possibility of me having anything else like schizophrenia or manic depression or OCD. It took about 15 minutes and when we were done he basically said to me there and then about whether he thought I had anything else (which I didn't) and then proceeded to refer me to the AS people. Maybe they'll do that for you if you're not sure?