Diagnosis

At this point I don't think there's much hope. It was made clear to me that I'm not going to get a second chance.

Have you thought of using the advocacy services? It seems to me that you may well be struggling with getting your points across. This struggle might suggest you have a real problem but it may obstruct the diagnosis process.

My main concern is dealing with the DWP.

If and when i have to go through another (and likely fail) WCA assessment I'm goign to have to deal with the JC+ and without any kind of support mechanism, should there be such a thing, I don't think I can cope.

At least an official diagnosis has a better chance of being taken seriously than a self diagnosis.

Sorry to hear that. I must say that I don't think that it is crystal clear from your posts whether you have ASD or not. I think your later posts were tending to confirm some autistic traits but it really isn't that obvious. Some people come on the forum and they are really "barn-door" obvious ASD and others are not. At this point it is probably best to think of yourself as a "known unknown". We know that we don't know that you definitely have the syndrome but equally nobody has suggested that you definitely aren't far enough along the spectrum to cause real problems.

For your own benefit you can still try and deal with yourself as if you think you might have autistic traits. You are entirely entitled and welcome to keep posting questions here to continue trying to work out if some of your problems are ASD related. You can also read around the subject to try and work out if your behaviour matches ASD. Before my diagnosis, I read the book "Living Well on the spectrum" by Valerie Gaus. This helped me work out that I did have the condition but it also gave me some strategies for living with the condition in a very positive way from day to day. It is important to know that having the diagnosis does not have to be a terrible thing. If you understand the condition, and how it makes you behave, then you can make more allowances for this and adjust your ways of dealing with the world accordingly.

Second opinions are available on the NHS. There is a recognised process for this and it is not up to anyone to deny you access to this. However, at this point I might suggest that you don't rush into this. One of the problems with ASD is that we have difficulties with communicating the things that we need to tell people. This leads to a real Catch 22 situation of being unable to communicate to a GP that we have genuine communication problems! Perhaps if you do some more reading and posting here then you might be able to make a clearer case?

I have spoken again with the clinician, she wopn't be changing her mind and has said that she has discussed this with her colleagues and there is no chance for a second opinion (which seemed a bit unfair). So unless my GP can suggest something, which I doubt because he isn't very supportive of all this, that's that.

The points I made above were not made during the assessment. They are my observations made after the fact; i have not presented them to the diagnostic team at all. These are my own otherwise private conclusions.

Even so, were i to have made the team aware during the process, i don't see how that could frustrate them. That's like a doctor saying you're too sick to be diagnosed. At the very least would they not have told me this?

I'm afraid I don't agree.

Wishface, i hope you won't be offended by the following comments (i'm aware that, as an aspie, i can be too blunt and sometimes fail to anticipate peoples reactions to my comments)

Do you think its possible that your habit of questioning and challenging could have undermined and obstructed the diagnosis process? Is it possible that your behavour has frustrated their enquiries and that is why they have been unable to come to a conclusion?

ManyStripes said:

If you can't specifically get a diagnosis of an ASD, can you at least get professional, clinical confirmation that you do have particular problems, symptoms and difficulties?

I don't know. Surely the same problem applies. They have not given me a diagnosis because they don't believe i have provided enoguh evidence to support that. So I don't know how they would support anything else they can't identify. Nor do I know how Ic ould get a second opinion: there's no one else available to assess me. So it would be the same people assessing me again.

If there are other diagnostic methods then I don't know what they are nor how I could persuade the clinician to employ them. The only tests were conducted were as follows:

1. I had to read a small book that comprised only pictures with no text and explain the narrative. The pictures were of frogs floating past houses on lilypads. Like a kids book (presumably intended to diagnose children).

2. select from a bunch of items that looked like they came from christmas crackers and construct a narrative employing each. I'm a creative person but felt exceptinally silly doing this.

3. watch a clip of four people having a dinner party and answer questions related to the subtext. The clip was not real, it was acted and also dubbed from a continental language. It was also painfully predictable to anyone with half a brain (the person that person a fancied actually fancied person b - like a cheap sopa opera). I questioned the value of this at the time for the above reasons. How can responding to a fake scene tell anything.

4. answer a series of questions to each of about 20 different social scenarios, similar to the one above. These were text based with the clinician reading them out at the same time. Some were obvious, others were not. Some also were ambiguous meaning that a number of different answers applied, or that the answers were painfully contrived.These sorts of things are easier as an adult if you have the intellect through experience to understand what is meant. They dont' speak to the difficulties i experience either.

5. look at series of photographs of faces croppped to show only the eyes, and then pick from a list of associated emotions to guess the correct one. Apparently noone gets this 100% and the fact the images are cropped is utterly unrealistic (i don't see people as cropped images, i see their whole face), and the nature of the cropped pictures means that any number of different emoptions could apply.

along with a brief and entirely superficial interview that didn't get to the heart of any of the problems i have comprised the diagnostic process in lieu of a developmental history. I have no idea if my reactions are typical of ASD people or if they mean anything. I don't think these tests are representative of anything personally. But then what do I know?

wishface said:

Who would giv eme a second opinion? I was seen by the only people available. Asking for one is fine, getting one is another matter entirely.

I think that's a question for your GP, initially.

And surely they will want the same information. They didn't give me a diagnosis because they couldn't get enough supporting information, which is the reason for wanting a developmental history.

There are various different diagnostic and assessment methods, so I don't think it's certain that the exact same information will be required.

If there's no possibility of providing a developmental history, then obviously methods that rely on developmental histories will be no good.  If you ask for a second opinion, you can take the opportunity to say that the assessment method will have to be one that doesn't require a developmental history.

Also, even if they say they 'need' a developmental history, that doesn't necessarily mean it's absolutely essential.  Those of us who are autistic may tend to take words such as 'need' in that kind of absolute, literal, unconditional, black-and-white way, and end up thinking there's no possibility of a diagnosis unless the 'need' is met, and therefore no point in even initiating such a process.  But words such as 'need' are often used more loosely - though it can be tricky for us to tell when that's so!

So, a clinician might say, "I need a developmental history," when what they mean is they need a developmental history because otherwise making a diagnosis is quite a bit more difficult and time-consuming for both them and you, though not necessarily impossible, though still less likely than if a developmental history is available.  Without understanding or allowing for that unspoken part, someone autistic could easily take what's actually said as being all there is to it.  It's one of the ways that ASDs can get in the way of getting those ASDs diagnosed.

A diagnosis isn't a guaranteed route to ESA since the system awards on the basis of fulfilling criteria and scoring points. But a diagnosis will certainly back up any claim for how criteria affect me. At the very least it should be taken more seriously than no diagnosis if I have to deal with the JC (which I will). It's no guarantee of anything, but without it they aren't going to giv eme any lattitude or support (not that they do anyway).

If you can't specifically get a diagnosis of an ASD, can you at least get professional, clinical confirmation that you do have particular problems, symptoms and difficulties?

NAS18906 said:

you might have to go back to the same team but they will probably have more than one consultant on their staff. Consultants will give their own opinion rather than copying their colleagues opinion.

if you can't get any parental accounts of your childhood then can you remember any incidents from your childhood that would suggest ASD? Do you remember any odd things that your teachers said? Do you have any old school reports that you kept for posterity? If you can illustrate your development with relevant incidents then this may be useful for a diagnosis.

you might have to go back to the same team but they will probably have more than one consultant on their staff. Consultants will give their own opinion rather than copying their colleagues opinion.

if you can't get any parental accounts of your childhood then can you remember any incidents from your childhood that would suggest ASD? Do you remember any odd things that your teachers said? Do you have any old school reports that you kept for posterity? If you can illustrate your development with relevant incidents then this may be useful for a diagnosis.

Who would giv eme a second opinion? I was seen by the only people available. Asking for one is fine, getting one is another matter entirely.

And surely they will want the same information. They didn't give me a diagnosis because they couldn't get enough supporting information, which is the reason for wanting a developmental history.

A diagnosis isn't a guaranteed route to ESA since the system awards on the basis of fulfilling criteria and scoring points. But a diagnosis will certainly back up any claim for how criteria affect me. At the very least it should be taken more seriously than no diagnosis if I have to deal with the JC (which I will). It's no guarantee of anything, but without it they aren't going to giv eme any lattitude or support (not that they do anyway).

I don't know much about getting second opinions, but I don't think it's something where you have to do the work of organising or arranging one yourself.  I think you're supposed to be able to just say that you want a second opinion, and then it's supposed to be arranged for you.

Searching the NHS website for "second opinion" (including quotation marks) gives "How do I get a second opinion?" as the first result.  It starts by saying:-

You can ask your GP or another healthcare professional for a second or further opinion (an opinion about your health condition from a different doctor). Although you do not have a legal right to a second opinion, a healthcare professional will rarely refuse to refer you for one.

For more information, see your right to choice in the NHS.

It goes on to say:-

If you would like a second opinion after seeing a consultant (a senior medical doctor who specialises in a particular field of medicine), you need to go back to your GP and ask them to refer you again. If your GP agrees to refer you to a new consultant, the consultant will be told that this is your second opinion. They will also be sent any relevant test results or X-rays previously carried out.

If you ask for a second opinion, you might not get a satisfactory diagnosis.  But if you don't ask for a second opinion, you certainly won't!

NAS can't change a diagnosis but they can advise you on how to deal with the system, how to present a case, how to get a second opinion etc etc.

i'm slightly confused here, have the mental health team said that there is nothing wrong or have they said that they are unable to decide whether anything is wrong?

NAS18906 said:

Can i suggest you contact the NAS helpline www.autism.org.uk/.../contact-us.aspx

they offer confidential advice on issues including problems with diagnosis.

Excellent post by ManyStripes! Which prompts me to think that some of the people at DWP may be prone to black and white thinking too! Perhaps some of them are on the spectrum too? In my experience I have had some really bad interactions, particularly before I was diagnosed and understood more about this, with other people who I would now be confident in classifying as mildly autistic. 

i think it's fair to say that you may not have an ASD, at this point you just have a suspicion that this might be the case.

Sorry to read of your unsatisfactory assessment

I'll start by saying the following.

From my own, personal experience, and reading of the experiences of others, I'm getting the impression that one of the difficulties we can have, both in seeking diagnoses and more generally, is that we can think some things are essential requirements when they're not.

For example, I was quite sure that I really did need a formal diagnosis of Asperger's or an ASD before I could claim ESA on that basis.  Only about two and a half years after starting my second attempt to get a diagnosis was I told, by my GP as it happens, that I didn't actually need one to start claiming ESA!  But for all that time, I'd been quite sure that I couldn't just claim, without a formal diagnosis, that I had an ASD, because it would just be my unqualified say-so.  Who am I to make any such diagnosis?  Surely the DWP would want something more formal and official!  That had been my (possibly somewhat autistic) thinking.

I don't think I was entirely mistaken in practice, though, since trying to express, describe and explain the difficulties I have without having a formal diagnosis to back me up is itself a huge difficulty.  And I imagine that's all the more so with the likes of the DWP!

Another personal example, but quite different in nature, was when I was told that the clinical psychologist who would assess me needed to see a parent or similar person who knew me well enough during childhood to be able to provide relevant information.  I was told, in writing, that it wouldn't be possible to see me and assess me without such a person present.  I was very uncomfortable with that, and telephoned the relevant people about it.  I soon spoke to the clinical psychologist who told me that what I'd been told in writing wasn't strictly true, and that they could see people on their own, since, after all, not everyone had anyone suitable they could bring with them.

But I could so easily have thought that there was absolutely no alternative but to either bring someone along with me - something I found too uncomfortable to face - or just give up with the whole thing.  It was only because I could see that such a policy discriminated against those who simply didn't have any such person to bring along that I felt I had any possibility of having any grounds at all to question that policy.

As it happens, after seeing the clinical psychologist on my own, one of my parents was separately interviewed as well, to get more information about when I was a child.  That really did help with the diagnosis.  But, obviously, that doesn't work if there's no such person available to provide such information.

Anyway, I suspect this kind of thing might be where an autistic trait is getting in the way.  If we're told something's not possible unless a condition is met, we'll tend to take that as the absolute truth, when perhaps it's supposed to go without saying that it's 'except in exceptional circumstances', or something like that.  Could it be one of the ways we tend to take things too literally?  Or in too black-and-white a way?

So, I'd like to suggest that when something seems to be an essential, absolute condition, but seems to be unmeetable, it may well be worth contacting the relevant people to check, to ask if it's really essential, and, if necessary, to try to point out that it means people in your kinds of circumstances are then excluded or otherwise discriminated against.

Another thing I'd like to say is that you're probably entitled to a second opinion.  I don't know who you'd see about that - perhaps ask your GP?  And I'd also agree with others that you really need to be assessed by someone who does specialise in ASDs.

Finally, a thought that occurs to me about your developmental history is to suggest that old school records might be helpful.  I don't know if you'd be able to get hold of any copies of such records, or how you'd go about doing that, but it might be an alternative way of getting some information about your developmental history that you could show a clinician.  If the schools you attended (I assume you went to school) still exist, you could contact them.  If not, perhaps the relevant LEA might have the records?  The secondary school I attended no longer exists, and I understand that the LEA has all that school's records now, so if I ever needed to, I could contact the LEA about them.

But if, like you say, there's no way you can provide any developmental history information, you should still be able to get properly assessed, though I gather it can still be more difficult to make a diagnosis without a developmental history.  But it's not a black-and-white thing where you absolutely must provide a developmental history in order to get a diagnosis.  It's more one of those things where the more information that's available, the better able the clinician is to make or rule out a diagnosis.  A little bit of information is better than none (so school records, for example, might help), but more information is better still.

Anyway, whatever you decide to do, I hope you have more success in seeking and getting a satisfactory diagnosis.

Can i suggest you contact the NAS helpline www.autism.org.uk/.../contact-us.aspx

they offer confidential advice on issues including problems with diagnosis.

NAS18906 said:

There is a real Catch-22 situation here. If you have ASD then you'll find it hard to explain your fears because communication problems are part of the disorder. ASD is often not diagnosed or other problems are misdiagnosed because of these communication problems.

why do you think you have Aspergers?

why is it important to you to have a diagnosis?

do you know who you saw at the mental health partnership? Was it a nurse, a psychologist or a psychiatrist?

I believe it, or somethong similar (as i say i'm not an expert), explains the problems I have functioning in society. I don't want to go into huge detail about all these issues.

It's important for me to get a diagnosis for two main reasons: a) it verifies and explains and b) i hope it can help me deal with the DWP, to put it bluntly.

AFAIK the person I saw was a psychologist. Not a nurse, of that I'm sure.

There is a real Catch-22 situation here. If you have ASD then you'll find it hard to explain your fears because communication problems are part of the disorder. ASD is often not diagnosed or other problems are misdiagnosed because of these communication problems.

why do you think you have Aspergers?

why is it important to you to have a diagnosis?

do you know who you saw at the mental health partnership? Was it a nurse, a psychologist or a psychiatrist?