Diagnosis!

Thanks AWTY. It's very strange about the thread on WP - there's somebody on there in UK, your age, who writes extremly similarly to you - because of the trouble with posting on that forum I didn't, and now I'll probably never find that thread again as I can;t remember what it's called or the user name!  I'd never normally make such an assumption, but I felt really sure if must be the same person.

By IBS, you mean irritable bowel syndrome?  I think I have that. Sometimes I'm fine for days (rarely as long as weeks) but other times I go through periods of one thing or another - usually bloating combined with extreme tiredness.  I thought I had ME but looked it up, felt doubtful, then spotted the 'similar symptoms' section, checked that and IBS fitted perfectly.  Apparently, allergies / sensitivities / immune system disorders are more common among people on the spectrum than the general population (not sure where I got this from so it may not have any truth in it, but I don't usually bother to remember things that don't seem worth remembering).

I tend to be pedantic but not deliberately - it is simply because of my literal interpretation of the words other people use. Whenever anyone uses the phrase 'mid-morning' I have to question when they mean: if morning starts right after midnight, mid-morning is 6am, but to me, that's very early morning. Or if it starts at 6am, mid-morning is 9am. But people usually seem to mean around 10.30 or 11-ish, which to me is late morning. It would be easier if people just said a time!

Technophobe23 said:

[quote][/quote]

Good job getting the diagnosis over and done with and thanks for info.

Yeah i heard if you get the GP to make the refer you can go private and it counts the same.  Either way im not going via NHS, it will send me over the edge, i want to pay and have control of as much as possible. If i could cope with it i'd rather go with NHS for sure.

You say you coped well up to now? good job on that also. What is your plan going forward does anything change or you just going to relax in the knowledge?

Hello AWTY - I'd have sent you a PM but I can't find a way of doing it (surely there must be a way on this forum?).  Anyway, just been looking at Wrong Planet forum and realised I was reading your thread. I won't post on that forum because of the massive frustration caused by that sodding captcha thing - it is extremely wasteful of time and effort, hence me not wasting my time replying on there.

My main point is that some of the comments seem very good and useful while some seem pretty poor. In case its any help, I can tell you I recognise almost all of the things you describe about yourself. You are also clearly very honest - another trait associated with AS.

I don't know whether you've given up on this forum due to the time it takes to get any repsonses? I prefer this one because althouygh the responses are thin on the ground, they tend to be of a high standard. The WP forum gets tons of responses but not many good ones and a lot that are just irrelevant or downright weird, in my humble opinion!

Also in my humble opinion, I think you're agonising too much over seeking a diagnosis.  Why not try to get one via your GP, whether you speed it up by going private or wait for the NHS?  What have you got to lose?

Hope this is of some interest or help.  

Hey technophobe thanks for the reply, i haven't yet joined that forum you mention but thanks for the link it looks like they get much traffic.  I guess there is someone talking like me over there? hehe, but nope its not me.

But yeah i am insanely honest, i have to protect myself to not get taken advantage of.

This forum is cool but could do with more activity, already got some great answers here though :)

I will defo be going via the NHS GP as i want the diagnosis to stand for something, i will be asking to do it privately after GP makes refer though as i want maximum control. 

Why im agonising over whether to bother with diagnosis is:

1.) I think it disturbs me to do something different and new, put myself out there and trust other people to be competent. The power of the state scares me a little also, i think that is pretty rational, the doctors have much power when they start making judgement about mental states of people and its an areas we still know very little about.

2.) I also sufffer with bad IBS i dont always feel comfortable with people, i might have to travel pretty far for sessions i think. Doesn't seem appealing.

3.) I have managed to make a small business and have a relationship, beyond that my life is nothing but i have those 2 great things + i eat well, exercise, sleep well, i take no pill of any kind.  Im pretty lucky to have these things i think, it disturbs me to do something different. I've already worked much less last 2 weeks thinking about a potential diagnosis and dealing with the GP.

Im massively pedantic it seems, another trait of ASD if im correct. But yeah im not sure im on the AS although it seems very much like it.  I did have any huge issues as a kid, i did have some learning difficulties and useless socially.

Thanks for reply, it helps :)

AreWeThereYet said:

Good job getting the diagnosis over and done with and thanks for info.

Yeah i heard if you get the GP to make the refer you can go private and it counts the same.  Either way im not going via NHS, it will send me over the edge, i want to pay and have control of as much as possible. If i could cope with it i'd rather go with NHS for sure.

You say you coped well up to now? good job on that also. What is your plan going forward does anything change or you just going to relax in the knowledge?

Hello AWTY - I'd have sent you a PM but I can't find a way of doing it (surely there must be a way on this forum?).  Anyway, just been looking at Wrong Planet forum and realised I was reading your thread. I won't post on that forum because of the massive frustration caused by that sodding captcha thing - it is extremely wasteful of time and effort, hence me not wasting my time replying on there.

My main point is that some of the comments seem very good and useful while some seem pretty poor. In case its any help, I can tell you I recognise almost all of the things you describe about yourself. You are also clearly very honest - another trait associated with AS.

I don't know whether you've given up on this forum due to the time it takes to get any repsonses? I prefer this one because althouygh the responses are thin on the ground, they tend to be of a high standard. The WP forum gets tons of responses but not many good ones and a lot that are just irrelevant or downright weird, in my humble opinion!

Also in my humble opinion, I think you're agonising too much over seeking a diagnosis.  Why not try to get one via your GP, whether you speed it up by going private or wait for the NHS?  What have you got to lose?

Hope this is of some interest or help.  

Hi - no problem with doing that, I think it's fine.

You're right about being used to trying to work out what people mean, as opposed to what they say. Experience teaches me just the same thing. I think it's always better to ask for clarity, it helps towards better understanding after all. It's important to make sure we understand each other, even when we have opposite views!

I was more interested in where you are geographicaly but, as I say, realised how dumb that was 5 minutes after I asked. Sorry for the confusion. My thoughts about 'private' diagnosis are things that I've heard from others and think I agree with, but like you, mine was NHS and I can't judge how good or bad anyone is, whatever the type of practice they're in.

I've been much the same as you - much more forgiving of myself since I found out what the condition really means, and with the help of others on here, just through talking, I've learned a lot about that. Diagnosis was the start, but phew! that was hard to take in at first...

classic codger said:

Hi, no, wasn't looking for a name, and even realised after I'd said it that if you name your health authority, the mods will take it off.

I've an interest, shared with others, in knowing what people's experiences are in their particular areas. For my part, I think it's important information.

As you say, no point in mentioning any names, personal or health provider. (this is 1st attempt at commenting within a quote - apologies if it looks as if I'm shouting!)

On another point you asked about NHS v Private, and why people distrust private. Not me, that was someone else. I think that any idiot with a degree in psychology, psychiatry or psychobabble is, by dint of their piece of paper, 'qualified' to give an opinion/diagnosis. It in no way reflects any particular expertise on the part of the paper holder.  I did wonder whether this was behind your question (one of the things I've learned over the years is that there are often hidden meanings behind the words people use. If this is not so, please accept my apologies - I think I may be over-suspicious these days).

I am conscious that we aren't allowed to share information about health authorities, but it does seem to me that some so-called 'psychiatrists, say the most stu[id and banal things to people seeking diagnosis - I've seen some appalling examples reported on here, the worst, I think, being 'you're doing OK, why do you need a diagnosis?'...

But, with private diagnosis, it's a one-off. You pay for the visit, you get what you pay for, and off you go. There's no 'long term' relationship with the private sector like you have with the NHS.

With the NHS, you have to get past 'steps' in the process, starting with your GP. This is what happened to me, and apart from being lucky enough to see one of the leading experts, I was getting the same opinion from each of the other steps. As a consequence, I felt able to trust my diagnosis completely, in exactly the way I wouldn't have had if I'd paid to hear it. That, and the fact that we all pay health insurance anyway, and are just as entitled as anyone else to make a claim against it. People forget that this is still  the basis for the NHS. I think I agree with all this.  I see no reason why I shouldn;t trust my NHS diagnosis completely. I can't express any informed opinion on private diagnoses. I imagine they must vary widely in quality, from very poor (the 'quack' end of the scale) to very good and on a par with anything available via the NHS.

I've only just seen this Codger - you must have posted it more or less exactly when I made my previous post.  If the response with the quote method I've used comes across badly, it isn't meant to - just an experiment. If it looks bad I won;t do it again.

I suppose it is almost a matter of logic that unless a person has a problem, they can't be helped - if they have no problem, they don;t need help!  I suppose this applies to 'impairment' too. I'm not personally looking for help in the form of active intervention - to me, knowing the reason why I have struggled in life from an early age, and still continue to find many things difficult (I'm talking about social things more than anything else - I have plenty of other traits but they are assets more than problems, to me) is help in itself.

I have actually found that I've learned a lot in just the oast couple of years. Once I started accepting myself as a person with AS, I felt less bad about finding social interaction hard work. And that led to it actually becoming easier, at least some of the time.  I've even become surprisingly proficient at meaningless banter! I'm still acting and I know I'm acting, but I no longer give myself a hard time for acting - which I used to do. I used to feel bad for being insincere or false. Now, I see that kind of acting as simply something I've learned as a way of coping.

This is just an example - best not to get mired in it, but I hope it helps explain why a diagnosis was important to me, and how it has helped me so far.

Hi, no, wasn't looking for a name, and even realised after I'd said it that if you name your health authority, the mods will take it off.

I've an interest, shared with others, in knowing what people's experiences are in their particular areas. For my part, I think it's important information.

On another point you asked about NHS v Private, and why people distrust private. I think that any idiot with a degree in psychology, psychiatry or psychobabble is, by dint of their piece of paper, 'qualified' to give an opinion/diagnosis. It in no way reflects any particular expertise on the part of the paper holder.

I am conscious that we aren't allowed to share information about health authorities, but it does seem to me that some so-called 'psychiatrists, say the most stu[id and banal things to people seeking diagnosis - I've seen some appalling examples reported on here, the worst, I think, being 'you're doing OK, why do you need a diagnosis?'...

But, with private diagnosis, it's a one-off. You pay for the visit, you get what you pay for, and off you go. There's no 'long term' relationship with the private sector like you have with the NHS.

With the NHS, you have to get past 'steps' in the process, starting with your GP. This is what happened to me, and apart from being lucky enough to see one of the leading experts, I was getting the same opinion from each of the other steps. As a consequence, I felt able to trust my diagnosis completely, in exactly the way I wouldn't have had if I'd paid to hear it. That, and the fact that we all pay health insurance anyway, and are just as entitled as anyone else to make a claim against it. People forget that this is still  the basis for the NHS.

Can you remember any symptoms from your childhood? And how is it impacting your life at the moment?

Sorry, just curious. People say you can't have help unless it's causing impairment. Define impairment!

Undiagnosed4321 said:

I guess it must help to put everything in perspective and make sense of things. 

It really does. That's why I sought a diagnosis in the first place - I'd started reading a bit about Asperger's and was amazed at how clearly it was describing ME!  That's basically what I told my GP (I went into a little detail but it wasn;t hard work - he's a nice bloke and said that although he'd be surprised if I did have AS, he'd refer me as he is no expert on the subject.  I did ask specifically to be assessed for AS.

The fact that as a result of the 'screening' assessment I was further referred for a formal diagnosis did mean quite a lot to me. I felt so sure that I had found the answer I didn;t even know I'd been looking for that I had few doubts about how the actual assessment would go.  I must admit, it took me by surprise. I was expecting something similar to the counselling I'd been to on & off in the 1990s, but it wasn't much like that at all.  The feeling of being stressed out in limbo didn;t start until I;d had my first assessment appointment!

It turned out OK though. As I notice somebody has commented on another thread started today, they are trrained and experienced enough to see through the superficial, and to notice AS traits even when overlain with years of self-taught coping strategies and acts.  I didn't have faith that this was so during the process, but looking back, I can see that it was true.

Thanks for that TechnoPhobe.

That's scary how long you have to wait. Im on the cusp myself in my life of doing something stupid. Although I appear very functional, I can't cope at work. I will end up quitting work and becoming a monk, or travelling to another country at some point this year. I can't do it anymore.

I've just been referred to "counselling" and some form of CBT. I haven't been forwarded to any assessment. Maybe I should go for pre-assessment?

When you went to your GP, did you ask for a referral for Aspergers/Autism? What issues did you present with? Did anything come out of the pre-assessment? Is that enough of a basis to tell people "maybe" before waiting for the assessment? Or did it just leave you in limbo stressing for two years?

Sorry for all the questions, Im just fascinated and intrigued, inspired and delighted. 

Congratulations. I guess it must help to put everything in perspective and make sense of things. 

Undiagnosed4321 said:

How long did each step of the process take for you, from going to see your GP and getting a referral, through to any initial CBT, the assessment and finally the confirmation?

Why was it a surprise for you to receive the letter?

I was surprised because I had formed the impression that I was regarded sceptically. Probably just worrying unnecessarily as usual, but from the way the psych seemed to view some of the tests I was given, I got the impression she thought I was not on the spectrum. She said I had performed 'too well' in the tests.

From seeing my GP to inistial interview (pre-assessment) must have been about a month.  From that initial interview (they call it a screening interview) to first assessment appointment was 2 years and 2 months! From then to second appointment was about another 7 weeks, and from then to receiving the letter was 8 days. 

If I hadn;t chased them up after 2 years, I may still have been waiting. At the screening interview I was told it could be 18 months before the actual assessement began, but in that time, the waiting time stretched even further.

I think that if I had presented with any isgnificant needs or difficulties originally, the wait would have been considerably shorter, but I did say that I didn't consider myself in great need, and wanted people whose needs were greater than mine to get priority, so all fair enough really.

How long did each step of the process take for you, from going to see your GP and getting a referral, through to any initial CBT, the assessment and finally the confirmation?

Why was it a surprise for you to receive the letter?

Thanks AWTY. Not sure what to do next, I think I'll give that some time and see whether anything occurs to me. Things tend to take a long time to dawn on me and it is usually best if I give myself a few days at least, on anything important.  Best of luck with whatever you decide to do.

Classic Codger - I would be interested to understand your question: "Diagnosis by whom?" - either you're asking for the name (which I won;t give for obvious reasons, and even if I did, I'm sure admin would be quick to take it down). Or maybe you are wondering whether the diagnosis was some quack online thing, or something like that?  I can only guess until you tell me!

Good job getting the diagnosis over and done with and thanks for info.

Yeah i heard if you get the GP to make the refer you can go private and it counts the same.  Either way im not going via NHS, it will send me over the edge, i want to pay and have control of as much as possible. If i could cope with it i'd rather go with NHS for sure.

You say you coped well up to now? good job on that also. What is your plan going forward does anything change or you just going to relax in the knowledge?

NAS18906 said:

Well done Technophobe!

The process is not easy but it is not deliberately hard in my opinion. If you are feeling depressed then everything seems like a conspiracy and everything seems more difficult than it would if you were feeling more cheerful. They could make it easier but making it easy isn't their goal - they want to get the decision right as it is a fairly permanent and significant decision.

The period after diagnosis can also be challenging as you try and work out what the hell you can do about it and what it means. I am coming up to the 2nd anniversary of diagnosis and can vouch for the fact that it is worth it but this next phase for you won't be simple.

Thanks Recom, it's good to get some positive feedback. I'm certainly feeling a lot more positive myself now. I will have to wait and see what the post-diagnosis phase manifests as. Right now, I'm very glad it's all over and I feel as if I can relax a bit at last. It wasn't just my imagination and it isn;t simply that I'm crap at everyday life while most other people make it look easy. I've been struggling for decades for a good reason, and I've actually coped remarkably well in the circumstnaces!

classic codger said:

Diagnosis by whom?

Is it a name you're looking for?

AreWeThereYet said:

So it was worth the effort in the end maybe.

Did you go NHS or private? do you think NHS would make the test more difficult vs private, im thinking they would.

NHS. Sorry, no idea re NHS vs private comparison as I have no experience of the latter. All I know is that I have read, on this and/or Wrong Planet forum, that private diagnoses are regarded with scpticism by some. No idea by whom, or whether there is any truth in it at all - merely reporting what I've picked up.

Well done Technophobe!

The process is not easy but it is not deliberately hard in my opinion. If you are feeling depressed then everything seems like a conspiracy and everything seems more difficult than it would if you were feeling more cheerful. They could make it easier but making it easy isn't their goal - they want to get the decision right as it is a fairly permanent and significant decision.

The period after diagnosis can also be challenging as you try and work out what the hell you can do about it and what it means. I am coming up to the 2nd anniversary of diagnosis and can vouch for the fact that it is worth it but this next phase for you won't be simple.

Diagnosis by whom?

So it was worth the effort in the end maybe.

Did you go NHS or private? do you think NHS would make the test more difficult vs private, im thinking they would.