Aspergers - Adult Diagnosis

[BG John]

I envy you having a date for your assessment. I don't even have that yet and so have to live in uncertainty for an uncertain period of time, which is something I find very difficult to deal with.

I've had the assessment, and this is supposed to be the results. But it was slow and frustrating getting here. I was put on the waiting list quickly (in December 2014), but no one told me until I chased them the following month. I was told on the phone there was a 10 month wait, which surprised me as I'd read it can take several years. So I decided it was OK to put my life on hold until then, as I've got big decisions to make once I get an answer, and need to get them right. I obviously didn't ask the right question though, as I thought I was asking when I'd get the results. In August I was told it would be about a year, which was a bit annoying, but not too much longer to wait. In December, I chased them up and was given an appointment for a couple of weeks time, for my "Pre Diagnostic Counselling". At that I was told it could be 3 months before I saw the psychologist to start the assessment. At that appointment I was told it would be about 3 months before I got the results. I've no idea how long the wait will be for what comes after the results.

 

I think they're doing their best with limited resources, but it's not a good way to deal with people who need things to be a lot more clear and precise than most people.

Edited April 26, 2016 by BG John

[Ian J.]

I've had the assessment, and this is supposed to be the results. But it was slow and frustrating getting here. I was put on the waiting list quickly (in December 2014), but no one told me until I chased them the following month. I was told on the phone there was a 10 month wait, which surprised me as I'd read it can take several years. So I decided it was OK to put my life on hold until then, as I've got big decisions to make once I get an answer, and need to get them right. I obviously didn't ask the right question though, as I thought I was asking when I'd get the results. In August I was told it would be about a year, which was a bit annoying, but not too much longer to wait. In December, I chased them up and was given an appointment for a couple of weeks time, for my "Pre Diagnostic Counselling". At that I was told it could be 3 months before I saw the psychologist to start the assessment. At that appointment I was told it would be about 3 months before I got the results. I've no idea how long the wait will be for what comes after the results.

 

I think they're doing their best with limited resources, but it's not a good way to deal with people who need things to be a lot more clear and precise than most people.

 

I've got even longer to wait then

 

I agree with you on that last point. The one thing I'm struggling with is the apparent lack of interest in keeping me informed on what is going on, and if there's one thing I hate it's not being kept informed! I've telephoned the centre and left messages for weeks and still no-one gives me a quick call back to let me know where things are at. I don't even know for sure if an assessment is being sought, let alone booked.

 

But from what I'm reading here and other places, this is apparently 'the norm'. My journey through the system only started in February this year, so I could have a very long and troublesome walk to the end

Edited April 27, 2016 by Ian J.

[BG John]

Can you write to them and ask for a clear statement of where things stand? Or get your GP to do it? Is there anyone else locally who can help you? Carmarthenshire Council has a support worker, who is very good, but very overworked, who has done what she can to help me. We've got some very good local politicians (at all levels from county council to MP), who I suspect would pull some strings, or knock a few heads together, if I asked them.

 

Things vary a lot depending on where you live. The adult service in West Wales was only set up a few years ago, and they do seem to be doing their best to get it right. I think part of what they do is also trying to raise awareness of the subject, so people are better treated. But they seem to have very limited resources. I doubt if I'd have got anywhere 5 years ago when I first mentioned it to my GP.

 

I think the facilities (service probably isn't the right word!) in some areas are pretty appalling, or non existent, so it seems to be a postcode lottery. Moving here was, with hindsight, a bad step, due to reasons I've only started to understand in the last year since I've been reading up on Aspergers, but as far as getting a diagnosis goes, it's probably a good thing I did.

 

Have you joined, or looked at, any forums? I've picked up quite a lot of useful things from them. I think it's been useful to compare my situation to that of other people. I think I'm in a better position than many to avoid a lot of the problems and stresses that bring some people down, so it's easy to think I'm lower down the spectrum and making a mountain out of a molehill, but then I read something others have achieved, and think "wow! how did they manage that? I haven't been able to".

 

I'm finding the NAS forum quite useful at the moment: http://community.autism.org.uk/latest-discussion-content

This one has its moments, but is generally pretty sleepy: http://www.asd-forum.org.uk/forum/index.php

I got rather overwhelmed by Wrong Planet, but it's worth a look: http://wrongplanet.net/forums/

Discovered this one last night, and it looks interesting: http://asperclick.com/

[Ian J.]

I will have to think about actually writing a letter! I haven't had to do that for years, and the telephone is there for that purpose and it annoys me that a recognised route of communication isn't being used properly.

 

It's early days enough for me not to have done too much research. Most of what I've done is looked up stuff via Google, particularly the National Autistic Society's website, to glean understanding from the outside, plus mentioning it here. I've read postings on forums from the outside (that is, not signing up, just reading without logging in). I have no idea what the quality of mental health services are in the West Hampshire area and wouldn't know who to contact to try and 'speed things up'. I would have thought the mental health worker who has my 'case' would be the one, but that's who's not phoning me back to keep me informed.

 

I'm not one to kick up a fuss and I really hate having to chase people up for things, so I tend to wait for good quality evidence before I move on an issue. I don't really want to say I have a positive ASD diagnosis until I have the piece of paper that says so. The trouble is, the DWP are understandably on my back to get work, in an area where 90% of the work is 'people-centric' and the remaining 10% is high skilled in skills I just don't have. Though the DWP advisor now knows that I'm in the process of getting the assessment, I'm sure they can't actually change their rules while I wait. I'm not a fan of my GP so I'd rather not have to go via them to try and speed things up.

[BG John]

I agree about quality evidence. I've been making decisions all my life based on inaccurate information about myself and my capabilities. I can't afford to get it wrong this time, which is why I can't act until I get a clear result. I think I've worked it out for myself, but need an expert opinion. I'm coming to the conclusion that neurotypicals make it up as they go along, making decisions based on hunches rather than facts, but they have more energy and resources to fix any problems that causes.

 

One of my concerns is with HMRC, rather than the DWP. A very pushy government department who at some point soon will demand action, that I can't take until I get results from a very slow moving government department. I bet there's no joined up thinking to deal with that one in my best interests!

 

I'd certainly recommend reading the two books I suggested earlier, "Complete Guide to Aspergers Syndrome" by Tony Attwood, and "Living Well on the Spectrum" by Valerie Gaus.

[Ian J.]

I'd certainly recommend reading the two books I suggested earlier, "Complete Guide to Aspergers Syndrome" by Tony Attwood, and "Living Well on the Spectrum" by Valerie Gaus.

 

I've added those two to my Amazon wish list. If I can get enough money together I'll buy them. Fortunately they have Kindle versions, which saves me having to have a pile of books building up in my near suitcase-bound living situation.

[47137]

I read "Positive Personality Profiles" by Robert Rohm, this helped me a great deal. It doesn't address Aspergers specifically but it helped me to see how I fitted in and especially how to work better with others. It was a good read.

Richard.

Edited April 29, 2016 by 47137

[Ian J.]

In the Mirror today: http://www.mirror.co.uk/tv/tv-news/suicide-agony-springwatchs-chris-packham-7865392

 

I wouldn't have guessed Chris Packham had Aspergers, bearing in mind just how much being in TV requires lots of contact with people. So he must be wrangling coping mechanisms pretty much daily.

[34theletterbetweenB&D]

...I'm coming to the conclusion that neurotypicals make it up as they go along, making decisions based on hunches rather than facts....

 Everybody 'makes it up as they go along' where there are insufficient facts or data to provide a fully reasoned decision. And that's most of life, for anything more complex than 'my bladder's full, better take a piss.. There's often a post facto rationalisation; most spectacularly when someone has triumphed mightily in some way and 'writes their book' telling the world 'how to do whatever it may be and succeed the same way I did it'. But typically it is all self-deception: those with real insight confess of their triumph 'the nearest run thing you ever saw in your life' or similar. (That was the Duke of Wellington on Waterloo.)

[BG John]

 Everybody 'makes it up as they go along' where there are insufficient facts or data to provide a fully reasoned decision.

40 years ago I was given the job of finding new photocopiers for the office. As a UK subsidiary of a US company, we had to send all our reports to the US on American size paper, but all our internal copies were on A4. The originals were produced on A4. I spent ages trying to find copiers that would handle the resizing properly, but they didn't seem to be available. In the end the job was taken off me, and the person who took it on bought new copiers almost immediately, but they weren't perfect for the job. On the other hand, I got a letter from the President (of the corporation, not the USA!) congratulating me on being the only person in the whole group who produced a set of graphs exactly as he had specified!

[34theletterbetweenB&D]

40 years ago I was given the job of finding new photocopiers for the office. As a UK subsidiary of a US company, we had to send all our reports to the US on American size paper, but all our internal copies were on A4. The originals were produced on A4. I spent ages trying to find copiers that would handle the resizing properly, but they didn't seem to be available...

 What symmetry. Right about then I moved to employment with the UK subsidiary of a large US Corp with a name begining with X that specialised in photocopiers that weighed at least ten times those of the newly emerged Japanese opposition. One of this business' problems was that the US based design teams were unable to remember that there were non-Imperial paper sizes in general use outside of North America. My personal tendencies to monomania came in very handy for 'helping' the US based designers realise the importance of catering for ISO paper sizes...

[jonny777]

In the Mirror today: http://www.mirror.co.uk/tv/tv-news/suicide-agony-springwatchs-chris-packham-7865392

 

I wouldn't have guessed Chris Packham had Aspergers, bearing in mind just how much being in TV requires lots of contact with people. So he must be wrangling coping mechanisms pretty much daily.

 

 

If you listen to Springwatch (or the other seasonal variations of the programme) carefully, there are clues that he gives including 'jokes' about having to produce a pie chart to show statistics in every show.

 

Although the media does have many regular contacts with other people, it maybe different for him being a well known personality. He can probably get away with face to face conversations because people will be in awe of him and his knowledge of the subject.

 

I went on a public speaking course once, and found it a nightmare because we were given random subjects and had to stand up and talk about them for a set period of time; and we were video'ed and everyone was encouraged to say what they thought when it was played back, which was almost as bad as the speaking part. My effort was cringeworthy, mainly due to nerves and because I had this strange feeling whilst speaking that I had been 'elevated' to almost an out of body experience where I was listening to myself trying to talk sense on a subject along with the rest of the group. (It's hard to explain).

 

Right at the end of my speech one of the course instructors asked me a tangenital question about wildlife gardening, and because I had just installed a pond in my garden, I carried onto that subject for a short while and the camera was left on. When they played the video back, it was unbelievable how my demeanour and authority changed at that precise point where suddenly I was talking about a subject that I knew well. I relaxed, my voice changed and I had suddenly become a different person outwardly, and probably inwardly as well although I can't say that I noticed at the time.

 

This became quite a discussion point afterwards, rather to my embarrassment; but showed how some peoples' public speaking performances will depend partly on the subject matter they are talking about.

[Mallard60022]

Chris 

 

If you listen to Springwatch (or the other seasonal variations of the programme) carefully, there are clues that he gives including 'jokes' about having to produce a pie chart to show statistics in every show.

 

Although the media does have many regular contacts with other people, it maybe different for him being a well known personality. He can probably get away with face to face conversations because people will be in awe of him and his knowledge of the subject.

 

I went on a public speaking course once, and found it a nightmare because we were given random subjects and had to stand up and talk about them for a set period of time; and we were video'ed and everyone was encouraged to say what they thought when it was played back, which was almost as bad as the speaking part. My effort was cringeworthy, mainly due to nerves and because I had this strange feeling whilst speaking that I had been 'elevated' to almost an out of body experience where I was listening to myself trying to talk sense on a subject along with the rest of the group. (It's hard to explain).

 

Right at the end of my speech one of the course instructors asked me a tangenital question about wildlife gardening, and because I had just installed a pond in my garden, I carried onto that subject for a short while and the camera was left on. When they played the video back, it was unbelievable how my demeanour and authority changed at that precise point where suddenly I was talking about a subject that I knew well. I relaxed, my voice changed and I had suddenly become a different person outwardly, and probably inwardly as well although I can't say that I noticed at the time.

 

This became quite a discussion point afterwards, rather to my embarrassment; but showed how some peoples' public speaking performances will depend partly on the subject matter they are talking about.

Chris P can find some public talks quite difficult as he seems to need to go into very great detail about things and can come over as being a bit 'boring' rather than 'jolly and entertaining'. However,  I find his presentation when working with others on SW to be entertaining and informative. If he is finding those presentations difficult then I admire his ability to appear as he does, that is quite relaxed, very knowledgeable and often quite funny too. He obviously has a gift for working on TV and I would judge him as being a sound bloke from seeing that, however I have no idea what he is like off screen other than at talks on Wildlife. 

The One Show spot with CP last evening was good and it would appear his book is really excellent. I'll read it.

Phil

[Ian J.]

jonny777: I can see your point there, as I experience it myself. If talking on a subject I have good knowledge of I can be relaxed and more free flowing, to the point of excessive (which might be an Aspergers thing). But if I'm expected to talk on something I have little or no knowledge of, or to 'just paddle in the shallow end of small talk', then I struggle because I don't know how to do that and despite having been in such situations at various points in my life I've never managed to figure out the social thing. I know that is an Aspergers trait, but might not be considered enough on its own to get a positive diagnosis. However, I do have other things going on which would suggest Aspergers.

[The Lurker]

Thinking about how Chris Packham comes across, you can see with hindsight that there are indicators; his lack of filters on certain subjects, the collecting obsessively of various things and so on.

[jonny777]

Thinking about how Chris Packham comes across, you can see with hindsight that there are indicators; his lack of filters on certain subjects, the collecting obsessively of various things and so on.

 

And yet, as Phil has said, CP seems to be great on live tv, because he can ad-lib on the subject without panicking which is an excellent ability that few on the telly possess.

 

Maybe a contributory factor is that he is just talking to a camera lens and not directly to another human being?

 

I feel rather uneasy discussing someone when they are not present to defend themselves (if that is the right word in this case).

['CHARD]

Thinking about how Chris Packham comes across, you can see with hindsight that there are indicators; his lack of filters on certain subjects, the collecting obsessively of various things and so on.

 

Maybe self-consciously though, Chris does display his coping 'knack' by turning aspects of the condition into humour - his need to work song titles by certain of his (and my) favourite bands into the show has always been a source of amusement.

[Kickstart]

jonny777: I can see your point there, as I experience it myself. If talking on a subject I have good knowledge of I can be relaxed and more free flowing, to the point of excessive (which might be an Aspergers thing). But if I'm expected to talk on something I have little or no knowledge of, or to 'just paddle in the shallow end of small talk', then I struggle because I don't know how to do that and despite having been in such situations at various points in my life I've never managed to figure out the social thing. I know that is an Aspergers trait, but might not be considered enough on its own to get a positive diagnosis. However, I do have other things going on which would suggest Aspergers.

Hi

 

This is something I really couldn't do. Talking about things as an 'expert' is just about impossible unless I really do know the subject. Making it up or telling lies would be very obvious (I am a terrible liar). I am probably far too open to admitting my own faults or lack of knowledge than is good for me.

 

All the best

 

Katy

[The Lurker]

Maybe self-consciously though, Chris does display his coping 'knack' by turning aspects of the condition into humour - his need to work song titles by certain of his (and my) favourite bands into the show has always been a source of amusement.

I nearly mentioned that trait too.

 

But I mainly enjoyed trying to spot the songs

[Arthur]

 

Chris Packhams book about his life and the events which shaped it, 'Fingers In The Sparkle Jar", is Radio 4s book of the week next week, starting on Monday 9th at 9:45 am, repeated at 24:30. It will be an abridged version narrated by Packham himself.

['CHARD]

Chris Packhams book about his life and the events which shaped it, 'Fingers In The Sparkle Jar", is Radio 4s book of the week next week, starting on Monday 9th at 9:45 am, repeated at 24:30. It will be an abridged version narrated by Packham himself.

 

 

What a great title!

[Poggy1165]

I hit 31, which is borderline. Doesn't really surprise me, as I have always known that I am not a 'typical' person, and a lot of stuff that most people enjoy is meaningless to me. And vice versa.

 

I wish they had had this sort of analysis and understanding when I was at school, as I probably wouldn't be so screwed up as a person. Instead they just hit you, and forced you to conform to their tedious stereotypes. No wonder I hated school.

[Tom J]

40 shiny points. I've always known it and I've never troubled myself looking for a diagnosis, just known that I could have one if I wanted one. I have a thoroughly neurotypical wife and other signs that my coping strategies are iteratively improving! ;-)

 

Interestingly I am revisiting my thinking about diagnosis at the moment as the remarkable similarity of one of my children is under scrutiny... I knew they were probably on the spectrum at about 18 months old...

[mightbe]

I took it twice accounting for slight ambivalence. Average of 34. INTP for what it's worth, since others had been mentioning Myers-Briggs types.

 

Quentin

[Mallard60022]

Chris Packhams book about his life and the events which shaped it, 'Fingers In The Sparkle Jar", is Radio 4s book of the week next week, starting on Monday 9th at 9:45 am, repeated at 24:30. It will be an abridged version narrated by Packham himself.

He was on the One Show (was it Tuesday evening?). Excellent little interview. He seems very comfortable in a TV Studio.

I'm really looking forward tp hearing him next week.

Phil