Diagnosis

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.

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.