First visit to a professional re: asperger's

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ascan
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16 Feb 2008, 4:33 am

lupin wrote:
...BUT, your National Health Service GP does not have to accept a private assessment/diagnosis. If you are lucky, s/he will take the private dx on board and then send you to an NHS specialist to confirm the private dx! This is particularly crucial if you need NHS recognition in order to claim state benefits or concessions. A private dx does not suffice most of the time...

Many private specialists also do NHS work. The chap I saw privately was exactly the same one I'd have seen through the NHS. It's the same for other consultants. For example, if you see a consultant urologist privately, odds are he'll be doing work at the local NHS hospital, too. The AS specialist I saw offered to write to my GP, but I told him I didn't want the state getting their grubby paws on that kind of information.

Although you have made a good point, I do not think most people see the primary purpose of getting a diagnosis to be convincing the state that they should be giving you benefits. Even if it is, then the then secondary one of actually knowing for your own peace of mind is still fulfilled by the private dx. If they say you don't have it, it saves you the psychological trauma of dealing with a bunch of incompetent NHS bureaucrats, and if you do you're better armed with a letter from a professional saying so.



googlewhack
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16 Feb 2008, 4:45 am

So I could go private without having to be referred by the GP? I feel very lucky in that my dad said he'd pay to go private. How do I go about finding an AS specialist? I'm not looking for any kind of state benefits, as I am able to work and look after myself. I'm just looking for the reason why I don't seem to think like everyone else.



ascan
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16 Feb 2008, 7:54 am

googlewhack wrote:
So I could go private without having to be referred by the GP? I feel very lucky in that my dad said he'd pay to go private. How do I go about finding an AS specialist? I'm not looking for any kind of state benefits, as I am able to work and look after myself. I'm just looking for the reason why I don't seem to think like everyone else.

If you're in the UK you can contact the NAS who will give you a list of consultants who'll do private work (at least they used to provide a list a number of years back). Alternatively, if you started a suitable thread with your approximate geographical location you may find someone who'll give you the details of a consultant who's relatively local as a number of members here have had a private diagnosis in the UK. Also, I think there's a centre somewhere in the UK that specialises in this kind of thing, but I can't recall the details -- perhaps someone else can.



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16 Feb 2008, 2:13 pm

In the UK, there is Milton Park Hospital [Exclusively ASD] - www.brookdalecare.co.uk , also CLASS [Part of Cambridge University/Cambridgeshire PCT] www.autismresearchcentre.com , mainly local NHS but I think still do some private. Have a look at the NAS website for others www.autism.org.uk


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16 Feb 2008, 2:37 pm

Ironically it was a GP that first suggested I might hove Asperger's all I can figure is that she most know someone who has it because she was in the room with me for maybe 15 minutes before she picked up on it, and that isn't even why we were there. I had been seeing couselors and stuff for years before this and NONE if them picked up on it... the fact I'm a girl didn't help much because I guess it affects more boys than girls.

The part you said about not really caring about going out with friends or making friends, sound Aspie to me. I like to have friends that I can hang out with when I need them, but most of the time I'm just as (if not more) happy alone in my dorm room than I am hanging out somewhere.


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16 Feb 2008, 11:43 pm

googlewhack wrote:
DivaD wrote:

if you need to talk about it please do, i've helped a few people through the diagnosis process and i know one of the big problems sometimes is just finding the will to keep going, to jump through another hoop, to see yet another person. and i struggle with a lack of confidence myself. but i know that most of my own issues arent explained by just 'lacks confidence', and anyway confidence comes through real success, its not just a state of mind.


Thank you, this gives me great hope. I know my issues can't all be explained away by a lack of confidence too. Maybe I should explain to the CPN that the reason I can't go out after work is because my week is like a rectangle, and anything in the night time (on the top of the rectangle) that requires me to go out is a detatched square that breaks the flow and uniformity and causes me to not want to do it. And that tuesdays are especially bad because they're the colour of thunder clouds, and if I had to go out I'd much rather do it on the solid brick-red thursday or a light green airy friday.

Will that get me locked in a padded cell? :lol:


hehe. probably not :lol: but i can bet you a CPN wont understand it, they probably wont have heard of synaesthesia and put it down to some personality disorder or OCD... they could be the same about the not wanting to go out, they might think thats a personality disorder too :( i got labelled with depression and personality disorders before i got assessed properly, unfortunately its common to get a history of misdiagnoses because of how bad the mental health system is.

so for the purposes of the mental health lot its better to think of it in terms of the diffficulties you have going out. saying "i dont want to go out" will get you labelled with depression. saying "i want to be on my own all the time" will get antisocial/schizotypical personality disorder... "it messes up my rectangle" gets misinterpreted as OCD. i had to learn to say "going out is stressful because i get distracted by all the confusing things going on around", that seemed to work... even then you have to be careful to avoid getting labelled with panic disorder and 'social phobia'!

think about it for a moment, what happens when you do have to go out?

i'm curious about the days though... is it the day or the word for the day that has the colour? like, does mittwoch and quarta-feira have the same colour as wednesday does? and if only my days were rectangular.... mine are more like french curves, completely crazy shapes that widen out in the evening so i get nothing done all day then end up doing everything at four in the morning!

i dont know much about private referrals... where abouts in the country are you? theres a place in cambridge called CLASS that does assessments, dont know if they do private ones though.... theres the centre for social and communication disorders which i think was somewhere in london, some guy called digby something in sheffield.... you will probably have to ring the NAS to find out (or get a helpful parent to do it), anyway good luck with that :)



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17 Feb 2008, 8:51 am

I'm in the West Midlands, which looks like you have to be under 18 to be diagnosed here. I'll check out those other places though.

To answer your synaesthesia question, mittwoch is a muddy green and quarta-feira has orange, red and yellow in it. It's usually the words rather than the concepts that cause the colour, which is why the colours are different for languages I don't know, but for some reason the word 'wednesday' isn't actually orange, but the day is. Yeah weird. I still haven't figured out why.

Right, looks like I'm going to end up saying all the wrong things to the CPN! Hmm. I DO want to go out, but it's my peculiar concepts of time and routine that stop me sometimes. E.g. if it's past a certain time then the circumstances aren't right. For me everything has to feel perfect for me to decide to do something, just like how every element on earth was just perfect enough to produce life. If I'm ready to face the shops because I REALLY need new shoes, and then someone asks me to do something like the washing up just before I go out, it messes up the plan in my mind and puts me in a bad mood and then I can't go shopping. Hmm can't really explain it. Maybe it really is OCD?

I do have obsessive-compulsive tendencies, but I can control them and don't HAVE to do what I want. E.g. I always have the same type of mug, spoon (dessert not soup spoon) etc, and would really prefer it if I could always have the same mug, and it makes me a litle uncomfortable if someone makes me a tea in the wrong kind of mug, but I can still drink it and enjoy it. And at bedtime I usually have to check my alarm clock is set, and I check usually at least 5 times, but I could cut it down to a double check if I really wanted to.

As for being alone, I like being on my own. I'm not against socialising at all, but I just feel like after a few hours of being out with friends I've got enough out of it and don't really see the point in spending any longer with them so I go home even if they're all going onto the next place or staying out much longer. If I stay to be polite I'm just bored and start daydreaming or really wishing I was at home. I tend to find the conversation mostly dull, and don't say a lot because I don't see the point in talking unless I feel strongly about something. This gets me down just because of peer pressure, people forcing me to stay out, or go out when I'd really rather be alone and just be myself. I also find it quit difficult to concentrate on someone talking and my brain just switches off and I end up watching people on another table or looking at all the details in the surroundings.

I do get depressed sometimes, but I really don't feel like depression is the cause of all this. Even at times where I've felt happy and confident I'd still rather be in my room making an animation than sitting for hours in the same bar with the music too loud.

When you say going out is stressful because i get distracted by all the confusing things going on around I think for me that only really applies to shopping, where I find that the sheer volume of things to look at makes everything seem overwhelming and I usually start to feel a bit shaky and unwell.

I just hate the fact that I have to hide who I am. There shouldn't be a problem with wanting to work on projects in my room, or having old-fashioned ideals on love and sex, or preferring meaninful knowledge to gossip.

God, I'm just so confused.



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18 Feb 2008, 12:12 am

googlewhack wrote:
I'm in the West Midlands, which looks like you have to be under 18 to be diagnosed here. I'll check out those other places though.

theres a charity called Autism West Midlands that also might know of who does assessments in your area, although the few people i know who've tried them dont have much good to say about them. might be worth a try anyway. i know the university of birmingham have an autism research department, but i dont think they do assessments.

googlewhack wrote:
Right, looks like I'm going to end up saying all the wrong things to the CPN! Hmm. I DO want to go out, but it's my peculiar concepts of time and routine that stop me sometimes. E.g. if it's past a certain time then the circumstances aren't right. For me everything has to feel perfect for me to decide to do something, just like how every element on earth was just perfect enough to produce life. If I'm ready to face the shops because I REALLY need new shoes, and then someone asks me to do something like the washing up just before I go out, it messes up the plan in my mind and puts me in a bad mood and then I can't go shopping. Hmm can't really explain it. Maybe it really is OCD?

that's a precise description of the infamous aspie love of routine and difficulty with coping with a change of plan. for the purpose of the CPN, emphasise the difficulty with coping with change, but don't say about everything having to be perfect (which would get them thinking OCD)

i know what you mean though, i have to get mentally prepared for things like shoe shopping, and the perfect days for it dont come along very often or very predictably. when people mess up those plans it is bitterly frustrating, they have no idea of the effort and investment of energy i've already put in just to psych myself up to even think of attempting something like that!

and having just spent a fruitless afternoon shoe-shopping in milton keynes i am totally brain-scrambled right now, forgive me if my writing is a bit off! :?

googlewhack wrote:
I do have obsessive-compulsive tendencies, but I can control them and don't HAVE to do what I want. E.g. I always have the same type of mug, spoon (dessert not soup spoon) etc, and would really prefer it if I could always have the same mug, and it makes me a litle uncomfortable if someone makes me a tea in the wrong kind of mug, but I can still drink it and enjoy it. And at bedtime I usually have to check my alarm clock is set, and I check usually at least 5 times, but I could cut it down to a double check if I really wanted to.


that still sounds like the aspie preference for routine and dislike of change, even small changes. OCD is more like "if i dont do this then Bad Things Will Happen!", its like an irrational fear.

i found i could eliminate most of my repeated checking by, when checking something, taking a deep breath, calming down, and deliberately remembering that i'd checked.

googlewhack wrote:
As for being alone, I like being on my own. I'm not against socialising at all, but I just feel like after a few hours of being out with friends I've got enough out of it and don't really see the point in spending any longer with them so I go home even if they're all going onto the next place or staying out much longer. If I stay to be polite I'm just bored and start daydreaming or really wishing I was at home. I tend to find the conversation mostly dull, and don't say a lot because I don't see the point in talking unless I feel strongly about something. This gets me down just because of peer pressure, people forcing me to stay out, or go out when I'd really rather be alone and just be myself. I also find it quit difficult to concentrate on someone talking and my brain just switches off and I end up watching people on another table or looking at all the details in the surroundings.


the difficulty concentrating on someone talking is important here, it sometimes gets called capd or apd (auditory processing disorder). it seems to be a part of AS for a lot of us.

googlewhack wrote:
I just hate the fact that I have to hide who I am. There shouldn't be a problem with wanting to work on projects in my room, or having old-fashioned ideals on love and sex, or preferring meaninful knowledge to gossip.

God, I'm just so confused.


you're right, there shouldn't be a problem with you just being you. however, other people see it as a problem because you're not like them, and in their eyes your not understanding why its a problem gets labelled a 'lack of social understanding' on your part. now you and i know that really there's two sides to the story, and that 'normal' people have just as much of a lack of understanding and empathy for us. but i'm telling you this so you understand what they mean when they talk about lack of social understanding.

personally i dont think there's anything wrong with spending ages by yourself working on your own projects, and i even used to have rather traditional values about love myself (real experience of relationships and intimacy forced me to change!) i believe everyone has the right to have their own identity, nobody should feel like they have to hide themselves.

have you got any projects finished enough to share with the world? is the comedy site one of yours, its bringing back waves of nostalgia :D (and a little neuralgia too, i hated bottom!)



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18 Feb 2008, 4:46 am

Yeah the comedy site is mine. I'm not happy with the html/css at all, I rushed it in order to start another project, so I'm planning on going back to it and making it look more professional. Another project I'm working on at the moment is trying to do some Flash animation. Have you ever listened to the Ricky Gervais podcast with Karl Pilkington? I've got sound files from that and am trying to animate Karl, but it's very frustrating because I can't draw. I've animated in Flash before though, I did a 45-second interstitial for Playhouse Disney last year, but it was with photographs so it was just like stop-motion in Flash. I also want to write a novel, and have scribbled down loads of ideas, but I'm just a bit scared of starting because I know it won't come out as perfectly as it looks in my head!

As for Autism West Midlands, I emailed them a couple of weeks ago when I was feeling really down, asking them what steps I need to take to resolve things, and they've ignored me so far.

I'm still so confused. The thing that's making me think "what if it's not Asperger's?" is the fact that I can understand body language and facial expressions. But other than that, I seem to display most of the other main traits. And although I understand body language, I still feel like everyone is really superficial/fake and am not interested in being around people unless they're talking about something with a purpose. *sigh*

The worst thing for me with breaks of routine is if I arrange to go out with someone, and they said on the day, "I'm not sure what time, I'll let you know". Gah! Time ticks on and I get more and more anxious, thinking how I could be doing something productive with my time, and the stress usually leads me to cancelling the night out. :?



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26 Feb 2008, 10:03 am

Well, I've just seen the CPN. She said I'm probably lacking in confidence and she's given me a load of self-help booklets on 'assertiveness' and 'self-esteem'. I suppose looking at those won't do any harm. She said I can go and see a counsellor (waiting time 4 months) but I don't see how that's possible when I have to work. Don't really know what to do now. I suppose I could just listen to her advice which is to be proud of who I am. She was from Holland and she said I'd fit in fine there because society doesn't expect people to have partners and be party animals when you're young. I don't live in bloody Holland though do I. She said I just have to accept who I am. I suppose that's all you can do really isn't it. :?



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27 Feb 2008, 2:17 pm

:(

unfortunately it sounds like she's just fobbing you off there.

sorry i am not up to writing, having a bit of a crisis :(



tbam
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27 Feb 2008, 7:24 pm

I understand your frustration regarding the different advices you've recieved so far.

When they say that you need to be more confident / assertive, how does that make you feel? Do you feel confident in some situations and not others?

You say you understand body language and facial expressions.

Perhaps the CPN may be right? Many of the symptoms of AS are quite universal across many personality types. It is easily adaptable if you run with a selection of the symptoms on a mild basis, instead of really focussing on how intense all of the symptoms are, and whether you can help them.

I am in a similar situation (in some ways) as I am in that mid-way point between knowing there is something different about me, finding asperger's and then approaching professionals about it.

I've trained myself to be able to look people in the eye when i'm comfortable and not stressed, or if i'm "acting". I can sometimes act even whilst stressed and look people in the eye, but it is only if i am talking about something that I could say that doesn't mean anything to me. Like in a job interview. I prepare myself. I did it by focusing on their mouth when they talk, to gradually lifting up to the eyes. I find its easy to do if you don't really look into their eyes as if they are eyes, if you get me, but if they are just another part of their body, like their eyelashes, or a knuckle. hehe.
However when I am talking very personally or putting a lot of concentration into what I want to say, or am thinking about I can't physically look people in the eye. My eyes always go to the ground, or something with a pattern or a point of focus.

That in itself may not be a symptom of AS.

However, no matter what I do to try to learn to read body language or facial expressions, or verbal / non-verbal hints, I can't do it. It just evades me every time. The only thing i notice is a change in body language, at which point I usually probe or stare or try and question the days happenings to work out what it "might be".

Just like, if I am building a computer or working on my computer, everything else in the world vanishes. I can't help it. If i had children, they could have walked into a swimming pool and drowned and I wouldn't notice or care to notice until I had finished what I was doing or got up to get a drink or something like that. This continues to happen (in varying situations) and every time I have told myself, that I won't do that again, and i will try and remember to look up and notice other things. But once i get in that zone, i'm useless to anyone but myself and what i'm working on. And unless there is CBT that can help that, no amount of self-teaching, adapting or learning has been able to change that in me.

Keep researching, and try to maintain critical of your own diagnosis. From what some people have said in this and other posts of their own travels, you and me alike are still in the very early stages of diagnosis, or confidently determining our condition.