Jump to content
Hortus

Hi [Figuring out the next step for Adult Aspie diagnosis]

Recommended Posts

Hi,

 

After a few years of thinking about it and investigating I think it's pretty clear I'm on the Asp spectrum somewhere. I spoke with a psychologist the other day who deals with children with AS and she things so too.

 

So I'm gearing up to approaching my GP to ask for a referral to an adult diagnosis centre and she said I should go 'armed' with a idea of the places/people I might like to be referred to.

 

Has anyone any recommendations at all [or places to avoid?]. I'm aware there appears to be a bit of an AS industry out there and really just what an honest evaluation. Ideally in London or the South/south-west.

 

Mostly I'm kind of Ok but I've noticed my life has 'shrunk' over the last few years and I tend to avoid going new places or meeting new people and I'd like this to change if possible. I'd also like to be able to hold down an approriate job and be able to generally manage a bit better. It's interesting how much has changed since my partner and I confronted this issue. Suddenly there's a reason for my idiosyncrasies and even small adjustments can make the difference between having a huge row or not.

 

I'm 41 and looking back it's interesting to see that this is probably ' what the problem was' all along! There have been so many incidents over the years that were just put down to me being sensitive or anxious of diffident or difficult.

 

 

Anyway- back on topic- any reccomendations?

 

HC x

Share this post


Link to post
Share on other sites

[Norfolk Broads? what's that about? I'm nowhere near? oops ]

 

Hi and Welcome to the Forum. :)

Norfolk broads is just one of the stages which corresponds to the number of posts made.It is the starting point whereas I am currently on Kilamanjiro :D

Karen.

Share this post


Link to post
Share on other sites

You're not, you're on K2. You left Kilimanjaro many many posts ago... :ph34r:

 

 

I do not want to confess to this.....it has been a very long half-term....I thought K2 was the abbreviation for kilimanjaro. :unsure::unsure::unsure:

So you cannot see me on kilimanjaro then ?

Edited by Karen A

Share this post


Link to post
Share on other sites

I do not want to confess to this.....it has been a very long half-term....I thought K2 was the abbreviation for Kilimanjaro. :unsure::unsure::unsure:

So you cannot see me on Kilimanjaro then ?

:oops: Kilimanjaro is in Africa, K2 is in Asia... K2 is a fascinating mountain; although it's the second highest (Everest, where Kathryn is currently sitting, being the highest) it is considered much harder and has an extraordinarily high fatality rate - something like 25% of people who attempt it die doing so. :(

 

I'm sure you could climb Kilimanjaro with appropriate training. It's definitely on my 'to do someday' list. The NAS run sponsored climbs there. :)

Share this post


Link to post
Share on other sites

so... any recommendations i can take to my GP about where to be referred- or is there a separate discussion about this...?

Share this post


Link to post
Share on other sites

Hi,

 

After a few years of thinking about it and investigating I think it's pretty clear I'm on the Asp spectrum somewhere. I spoke with a psychologist the other day who deals with children with AS and she things so too.

 

So I'm gearing up to approaching my GP to ask for a referral to an adult diagnosis centre and she said I should go 'armed' with a idea of the places/people I might like to be referred to.

 

Has anyone any recommendations at all [or places to avoid?]. I'm aware there appears to be a bit of an AS industry out there and really just what an honest evaluation. Ideally in London or the South/south-west.

 

Mostly I'm kind of Ok but I've noticed my life has 'shrunk' over the last few years and I tend to avoid going new places or meeting new people and I'd like this to change if possible. I'd also like to be able to hold down an approriate job and be able to generally manage a bit better. It's interesting how much has changed since my partner and I confronted this issue. Suddenly there's a reason for my idiosyncrasies and even small adjustments can make the difference between having a huge row or not.

 

I'm 41 and looking back it's interesting to see that this is probably ' what the problem was' all along! There have been so many incidents over the years that were just put down to me being sensitive or anxious of diffident or difficult.

 

 

Anyway- back on topic- any reccomendations?

 

HC x

 

 

Hi all,

HC, Your post gave me goose pimples! It is almost exactly what I was going to write accept I'm 41 next month!

 

Anyhow, I managed to find a referral centre for the West Midlands by contacting Autism - West Midlands 0n 0121 4507580. IF you call them I'm sure they can give you the number of your local Autism service and then they'll give you the relevant referral centre for your area.

 

Max

Share this post


Link to post
Share on other sites

Hi Max.

 

How's it going?

 

Have you seen your GP yet?

 

HC

 

Hi HC,

It's going okay. I've seen my GP once about it and she was very supportive but Aspergers wasn't the reason why I went to see her so it took a backseat. I'll go again next week and give her the referral details. At the end of the day if you want to be referred then your GP must comply.

 

Cheers,

Max

Share this post


Link to post
Share on other sites

Hi HC,

It's going okay. I've seen my GP once about it and she was very supportive but Aspergers wasn't the reason why I went to see her so it took a backseat. I'll go again next week and give her the referral details. At the end of the day if you want to be referred then your GP must comply.

 

Cheers,

Max

 

 

Hope it goes Ok.

 

Let us know how you get on.

 

HC

Share this post


Link to post
Share on other sites

Hope it goes Ok.

 

Let us know how you get on.

 

HC

 

 

Hi,

My GP has referred me. I'll let you know when I'm contacted by the referral centre.

 

max

Share this post


Link to post
Share on other sites

Hi Hortus, i'm 33, in Hampshire too, and just got a diagnoses for AS, from the ADRC in Southampton, you would need to get funding through your GP (unless your loaded) think it cost thousands. I had done allot of research, and completed all the tests i could to take along with me to my GP to add weight to my case (i don't think he would want to ok heavy funding with out feeling confident)

 

ADRC southampton

Unity 12

9-19 Rose Road

Southampton

SO14 6TE

Share this post


Link to post
Share on other sites

Hi, Variants,

 

Thanks for that- was it OK at ADRC? I've also done some online stuff (the Baron-Cohen test and also the Oz children's one) and so you think it'd be good to take along to my GP? I suppose I should start making notes and 'prepare my case' a bit. How long did you wait between seeing your GP and going to ADRC?

 

Now you've got your diagnosis- what now?...

 

HC

 

 

 

 

 

 

Hi Hortus, i'm 33, in Hampshire too, and just got a diagnoses for AS, from the ADRC in Southampton, you would need to get funding through your GP (unless your loaded) think it cost thousands. I had done allot of research, and completed all the tests i could to take along with me to my GP to add weight to my case (i don't think he would want to ok heavy funding with out feeling confident)

 

ADRC southampton

Unity 12

9-19 Rose Road

Southampton

SO14 6TE

Share this post


Link to post
Share on other sites

Hi, the ADRC is a unit set up for diagnosing adults on the autistic spectrum, mainly HFA/AS i think, i found it as good as it could be up there, welcoming and reassuring, i went up for 2 days in all ~10:00-3:00, about 2 weeks apart. i think i had done an AQ test and a sensory one too, i also had a copy of the diagnostic criteria for AS, had my history + present functioning/day to day living, all notes and copies with me so me and my doctor could look through it together. i think it was possibly about 1 to 2 months for funding and about 2 weeks to a month to get my appointment at the ADRC.

 

what now,. the ADRC officially diagnose you and compose a file for you with your requirements, eg. environmental, sensory, social. for work ect. really it formalizes the issues we go through, and protects you under the discrimination act as AS is a recognized condition. I’ve never been one for labeling myself to use as a tool to gain attention, but it became very important to me to draw a line under the doubt and constant questioning of myself so I could move forwards, it’s nice to know I have some protection too. There isn’t any cure (as I’m sure you know), I believe there’s a type of cognitive behavioral therapy focusing on solution based problem solving that can help overcome some problems. sometimes just knowing you and what you need relieves the pressure.

 

adam, aka Variant.

Share this post


Link to post
Share on other sites

That's really interesting, Adam. Thanks for replying.

 

I'm still gearing up to going and seeing my GP.

 

My worry is that I'll maybe fluff it up or not get referred- which will either be right [and therefore mean there is something else going on in my head?!] or be wrong and I'll have to battle on. I really hate anything where there is potential conflict and generally end up agreeing so my concern is I'll either under or over state my problems.

 

Did you go alone to the Gp/Assessment centre? I wonder if my partner my be a good source of back-up and help me stay focussed. Or will that just look 'madder'?

 

Grrr...wracked by indecision now! :unsure:

 

It's worth remembering Adam, that your diagnosis is your information to share with whoever and whenever you choose.

 

 

HC

Share this post


Link to post
Share on other sites

Hi,

 

My worry is that I'll maybe fluff it up or not get referred- which will either be right [and therefore mean there is something else going on in my head?!] or be wrong and I'll have to battle on.

 

i can really empathize with that (been in a similar thought process), but ultimately the answer is better than the thought process, so get the answer.

 

so your setup right, thinking back i think i was "referred" by a psychologist, i think i over looked it in my series of events because to me towards the end i was telling everyone what i needed to happen. ie, went to my doctors with all the info not knowing who can diagnose AS to talk to him about getting sent on to someone else to look in to it, so he referred me on to a psychologist for (which i didn't know) "anxiety/stress". the first appointment was very confusing, me with all my info and her trying to get all CBT about me, but in the end i steered the time to look at how i felt i functioned and how i saw the world and how that connected with AS. she was very good and not knowing much about it herself found out about how she could help in the time we had, also finding out about the ADRC by the end of are fixed 10 week course referring me back to the doctor for referral to the ADRC. she was really good, in the past i had seen another psychologist who labeled to a narcissist with borderline personality disorder,.. which really hurt, mainly because the stuff i think doesn't connect with an ego (i don't think i have an ego like "normal" people) so although i enjoy thinking i'm not narcissistic!..... i guess the moral of the story is even if you don't get where you need to be at first that doesn't mean that’s the end, and also most people don't know much about AS and you really do need to know your stuff and try a get the situation where it needs to be.

 

(sorry i left that bit out before)

 

.. i did it all by my self, as i figured i would use my wife to compensate for me, so in a way by going by myself and being me, how ever embarrassing and uncomfortable it is those are the things the people your seeing need to see as that is AS.

 

thanks for your final words, i do actually keep it to myself, as awareness can lead behavior, i like to see myself a normal with areas of intensity.

Share this post


Link to post
Share on other sites

Hi Hortus,

 

I'm at a similar stage to you. (I'm 39) I've become more and more convinced that i'm on the spectrum somewhere, especially after reading some stuff by AS people - Daniel Tammet, Liane Holliday Willey (is that her name - something like that).

 

I found the National Autistic Society helpful, though it took a few times to get through on the phone. They gave me a list of assessment centres which specialise in Aspergers which i took to my GP. Also, a sheet of information written for GPs. I got referred for an assessment, which he estimates will happen in the new year. He advised me to phone the centre if i haven't heard anything by January.

 

My GP is easy though - he'll pretty much refer me for whatever i ask for. With less easy GPs is probably pays to think carefully about what you're going to say.

 

How's it going in getting up the courage for a GP visit?

Share this post


Link to post
Share on other sites

Well, I had an appointment booked for Friday, but i've just put it off 'till Monday as the previous Dr is going on maternity leave on Friday so it seems little point seeing her. To be honest I really wanted to cancel it outright.

 

At the moment I feel a bit sick at the thought of going and wondered if a way round this was to send a letter beforehand, outlining the issues. that way i don't have to start the conversation. Although I appreciate that that may look a bit odd/ very odd.

 

I'm just really dreading it in case she says it's just depression or anxiety or something else I haven't bargained for. Or indeed, that there's nothing wrong. In the past I've had [fairly unsuccessful] counselling for anxiety/depression and I really just don't want to do that again. i did that privately and this is the first time I've gone to the GP with a 'mental' type thing and it frightens me a bit.

 

And even if she does refer me, then I have to go through it all again with some new people and then what happens.....do you see how it's going?!

 

Sorry- I just need to get it out. But it goes round and round in my head and I have trouble concentrating at the best of times.

 

 

 

:unsure:

Share this post


Link to post
Share on other sites

Sorry about that. Was getting a bit overwhelemed.

 

I thought I'd focus on some fact-based prep to distract me for a bit and did the Baron Cohen AQ test [score 34!] which I printed out for the Gp and also went through the AS handouts and highlighted the bits that seemed relevant.

 

I'll just go with my pile of handouts and work through them.

 

I'm just concerned about what another poster said- that 'diagnosis leads behaviour' and worry I will or will seem to be 'acting AS'.

 

Can't win it seems !

Share this post


Link to post
Share on other sites

Hi Hortus,

 

I'm wondering why you're dreading the GP visit so much? And the whole assessment business? Is it just 'cos you don't want to be fobbed off with being told you're just deppressed, or is it the talking-about-it-all thing?

 

I've worried about the same thing - with being told i'm just depressed - so i do admit to downplaying the deppresion on a visit to my GP. But, the problems living with aspergers can cause is kind of likely to make us deppressed, so it shouldn't discount it.

 

It sounds to me like you're doing all the right things. I don't think it's that odd to write a letter to your GP (i know other people who have done it) and also, it would show an aspergers tendency.....

 

And why do you want to get diagnosed? I'm not saying it's a bad idea, but lots of people self-diagnose and that's enough for them to carry on and learn how to deal with it better.

 

It's interesting how differently we all approach it. I'm quite keen to get diagnosed and i think i'm looking forward to the assessment. I admit i find psychological stuff really fascinating (i think it might be my current narrow interest), but also i'm probably wanting the attention if i'm honest.

 

Sometimes i feel really positive about my aspiring aspie tendencies, and sometime i just feel defective. When i'm at my lowest it's as if everything that i thought was me is really just a group of symptoms - my tenacity, reliablibility, honesty, love of animals - all aspie traits.

 

Are you looking at aspergers as a bad thing or just the process of getting diagnosed?

Share this post


Link to post
Share on other sites

Hi Cardamine,

 

I'm dreading the Doctor's really cos I just hate meeting people I don't know and strange rooms [all of which is very Asp] and it all makes me very nervous and I talk to much and generally behave like a bit of a wazzock [if that's how u spell it?] and make jokes and undermine what I mean to say and also because of how it might go- either referral or not worries me...

 

I know what u mean about the aspie specialness- I love that I will follow a project to the absolute end [if it interests me], I love that i can resolve quite complex peroblems fairly intuitively and I love what I call 'fact-based fun'- to have it labelled ' a mental problem' or a disability or diffability is a bit unpleasant. I like to think of it as an alternative or as a variance. It's a bit like being labelled as inferior for your sexuality or race or gender and I know we have legislation, but it's the thought of being known as 'the aspie one'- I know we all have labels and I suppose it would at least be better than being known as 'the peculiar one'! However I do need to stop my life shrinking, otherwise I will spend my whole life indoors and not contribute to the world or be in any way independent and that is something that I want to stop. It feels a bit like they'll have to be a 'coming out' moment and that is scary.

 

I'd rather not self diagnose- I do like a definite answer and at the mo we do flag up aspie things at home- like I just got in from a committee meeting. I hate the interaction and get embarrassed and blush, but i cannot let people trample over others- so I'm caught in this quandry and just have to bite the bullet and attend. But it's a battle against the ASp. Also i worry that if those poeple knew i was AS they might discount my contribution in some way- however well-meaning.

I suppose I feel like I'm opening the door onto a street I don't know and that's a bit scary.

 

I really like absolutes and things that are undecided bother me a huge amount.

 

And I've rambled too much again :oops:

 

HC

Share this post


Link to post
Share on other sites

Hi Hortus,

 

I think the ramblings of an aspie are probably what other people would call quite concise.

 

All made sense to me. I like facts and definates too, trouble is the people who we'll be dealing with in seeking a diagnoses are likely to be way more vague than us.

 

Could your partner go with you to see the GP? Or, you could write a list of points you want to made beforehand and try to stick to it?

 

If you don't get referred then i think it's possible to get an assessment privately - that's what the NAS told me, and they can give you a list of places. I've no idea how much it would cost though.

 

So, if or when you get your diagnoses it's up to you who to tell. I don't think we have to wear an 'A' on our heads (though sometimes i feels like i already do). So, as i understand it, a diagnoses would tell us that we've understood ourselves properly, are not deluded and know what our problems are. Then the difficult bit will be trying to work to reduce the negetive impact of our AS. I don't see that anyone needs to know, unless it would be useful to us. I'd hope that they might just notice us becoming a little less difficult than we used to be - but not less interesting or with less integrity or humour.

 

That's my hope.....

Share this post


Link to post
Share on other sites

I love that I will follow a project to the absolute end [if it interests me], I love that i can resolve quite complex problems fairly intuitively and I love what I call 'fact-based fun'- to have it labelled ' a mental problem' or a disability or diffability is a bit unpleasant.

But a diagnosis of AS/ASD requires that the difficulties have a pervasive effect across all areas of functioning. If it is not disabling to you (and I would suggest that your comparison with gender, ethnicity, etc. suggests it is not) then do you need a diagnosis? What I would term 'loose diagnosis' of individuals not disabled by their AS is disabling to those who really need the diagnosis, as their needs are not recognised and are seen as insignificant.

Share this post


Link to post
Share on other sites

My comparison with gender etc was more about labels and judgement and not equating AS with them but rather how we are judged by the labels we wear, or other place on us.

 

I'm not sure what you mean by 'across all areas of functioning'. Some things for me are fine, clearly, for example expressing myself in a discussion forum. But most direct human interactions are fraught with anxiety and often misunderstanding and often end without the desired outcome, so I tend to avoid it. Which in our culture makes my life pretty tricky.

 

You speak as if there is not an infinite variety of AS variants and that 'bad, casual, undeserving diagnoses' are affecting 'good, deserving' cases. Or that Aspies can't develop coping strategies to help them muddle through.

 

What's your experience of AS?

Share this post


Link to post
Share on other sites

You speak as if there is not an infinite variety of AS variants and that 'bad, casual, undeserving diagnoses' are affecting 'good, deserving' cases.

Well that's not the language I used, you're making that up. However, yes, in essence, I would say that this is true, although I'd probably replace 'good, deserving' with correct and accurate.

 

When you ask what my experience of AS is, do you mean what qualifies me to comment on the subject or what is my personal experience of being on the Autistic spectrum? If the former, lots. If the latter, then that's an impossible question, you may as well ask me what my experience is of life, and as I don't know you, I'm not going to launch into my biography here.

 

Are there an infinite number of variants of AS? No, if there were every behaviour would be classed as AS. People with AS may be different from each other, but that's as much to do with every aspect of their life being different. In fact, the AS is probably the more similar thing about them as their share the same common difficulties.

Share this post


Link to post
Share on other sites

as I don't know you, I'm not going to launch into my biography here.

 

 

....and yet to going to make a judgement on whether I should seek a diagnosis or not.

Share this post


Link to post
Share on other sites

as I don't know you, I'm not going to launch into my biography here.

 

 

....and yet to going to make a judgement on whether I should seek a diagnosis or not.

Firstly, those two issues are not related at all, therefore your argument, if that is what it is, makes no sense.

 

Secondly, I have not judged whether you should seek a diagnosis at all. I have raised an issue that you are likely to come up against during the diagnostic process and ensuring you were aware of the diagnostic criteria. You must accept in using a forum like this that you will be faced with things you want to hear and things you don't want to hear. Just because you don't want to hear something, or something that is said is something you do not agree with, is no reason to be cross with the person posting that item. You need to accept that people have different beliefs, feelings and perspectives from your own.

Share this post


Link to post
Share on other sites

Part of the criteria for diagnosis is that you have substantial difficulty in everyday life due to having an ASD (or something along those lines). I am not judging whether that is the case, but it's worth bearing in mind.

 

My mum spoke to my GP before I went in. It was an 'accident' (she had an appointment for something else, but tends to bring me up in her appointments because she constantly worries about me, so she started talking about me and my suspected ASD). This turned out to be quite helpful because I already knew that he wasn't at all dismissive (my main concern beforehand) and from what he said to her seemed to think it was definitely likely that I had autism (so I felt confident that he'd refer me, and I'd get a proper answer as to whether I was on the spectrum or not). My mum also accompanied me to the appointment with my GP (both parents accompanied me to the assessment; at least one parent was mandatory). I also took a letter to my GP, as I struggle to communicate verbally. So, perhaps if your wife is in agreement with you she could go beforehand to speak to the GP about it, and scope out his/her opinion before you have your own appointment? Then she can accompany you, and/or you can write a letter for your GP to read before actually speaking to you about it. Or she could just accompany you on your own appointment, if two appointments for what is basically the same thing seems a bit excessive.

Share this post


Link to post
Share on other sites

I'm well aware of what goes on in online forums.

 

However if you re-read your posts and 'join together the dots' you effectively say that I don't need a diagnosis and if I received one it would not be 'correct and accurate' and would be damaging those with 'correct and accurate' diagnoses -[presumably you include yourself in this group]. Yet you do all this without sharing any information about yourself or really knowing anything about me. Quite a gift.

Share this post


Link to post
Share on other sites

However if you re-read your posts and 'join together the dots' you effectively say that I don't need a diagnosis and if I received one it would not be 'correct and accurate' and would be damaging those with 'correct and accurate' diagnoses -[presumably you include yourself in this group]. Yet you do all this without sharing any information about yourself or really knowing anything about me. Quite a gift.

No, you're adding to what I have said, forming your own interpretation (possibly based on your insecurities) and then being rude to me because I have an opinion different to your own. There is no need for that.

 

As to whether you need a diagnosis, I was simply pointing out, as another poster has done, the criteria which state the need for substantial difficulty in everyday life. You have, in the posts in this thread, said some things which would suggest the issues you face do not cause substantial difficulty, i.e.:

 

Mostly I'm kind of Ok

 

I love that I will follow a project to the absolute end [if it interests me], I love that i can resolve quite complex problems fairly intuitively and I love what I call 'fact-based fun'- to have it labelled ' a mental problem' or a disability or diffability is a bit unpleasant.

 

Of course, I can only go on what you post here. All I have done, as I have said before, is raise an issue you may well come up against in going through diagnosis.

 

I'm well aware of what goes on in online forums.

I was not talking about online forums specifically. I was talking about life. Throughout life you will come up against people with different opinions to yours and you need to accept this rather than react in exactly the ways you have here if you disagree with someone.

 

Asp spectrum

Just to ensure you have all the correct information, there is no such thing as an 'Asp spectrum'. There is an Autistic Spectrum (or ASD) and Asperger's Syndrome which is part of the Autistic Spectrum, but no Asp / Asperger's Spectrum. :)

Share this post


Link to post
Share on other sites

Hello,

 

just to say, I'm pretty much in the same boat as you. I'm looking for someone to get referred to - around North yorkshire. My son was diagnosed with Autism just over a year ago - after reading a LOT I've realised that I must have AS. I really struggle with a lot of things and always have - I thought I was neurotic/crazy - I suffer from depression and ocd, major anxiety, huge anxiety in social situations. Plus there are sensory issues...I never realised why I couldn't cope in the supermarket lol...

 

Anyway, I'm scared of going to the doctor too and I've put it off for the last few months. I also want to go to a doctor that's sensitive, it's problematic. I worry that it'll be thrown in my face. I want to be as prepared as possible. Good luck! I'd like to know how it goes for you :)

Share this post


Link to post
Share on other sites

Well I would encourage all those thinking about asking to be assessed to go ahead and do it. Diagnosis is not just handed out, there is still a great deal of rigour in the assessment and people I know who've done it have felt it very worthwhile.

 

 

Mod note: can we please deal with the issues rather than getting personal?

Share this post


Link to post
Share on other sites

Hi HC,

It's going okay. I've seen my GP once about it and she was very supportive but Aspergers wasn't the reason why I went to see her so it took a backseat. I'll go again next week and give her the referral details. At the end of the day if you want to be referred then your GP must comply.

 

Cheers,

Max

 

I thought I would say.It is not true that the GP must comply with a patient request for anything.A GP makes an assessment of the patients symptoms.A clinical decision is then made regarding whether referral is needed.The GP also decides whether referral would in his/her opinion be a good use of resources.In order to refer a GP would also need to establish that a condition requires treatment and that treatment is available.

.Finally he/she has to have a professional to refer to.

 

A GP may well argue that a person with AS who is not mentally unwell or limited by possible AS does not require referral because there is nothing to treat.

 

A GP would not refer me for investigations into whether I have a broken arm today just because I happen to have pain in it and think it could be broken.ASD is no different.

 

I have payed for psychotherapy for the last ten years and their is no doubt that at one time I needed it.There would have been no point expecting my GP to comply with a demand to fund it because it is not available within the NHS.

 

It is a daily occurence in the media that people feel the NHS should fund provision because they feel strongly about it from a personal perspective.The NHS is not a bottomless bank that can provide everything on the basis that individuals demand it.

 

Karen.

Edited by Karen A

Share this post


Link to post
Share on other sites

Hi Hortus.

 

To look at the debate from a different perspective.I wonder what you hope to gain from diagnosis and whether this is something that diagnosis would enable you to have access to ?

 

Karen.

Share this post


Link to post
Share on other sites

Hi Karen,

 

Thanks for bringing it back on track.

 

My understanding of the referral system was exactly what you say. In no way was I going to demand a referral, just investigate if this was an appropriate course of action and let my GP decide. Obviously I need to present as honest and full a picture as I can.

 

The thing I most hope to gain should I ultimately receive a diagnosis would be some sense of calm and harmony, and an ability to just get on with my life a bit more, if that's not too wooly.

 

Specifically, this would come from a greater understanding of the way my brain works so I can reduce my stress levels by avoiding or coping with difficult things more effectively. This would help at home as there would be aprreciation that some things are difficult and distresssing for me in a way that seesm out of all proportion to my partner. For example; that simply going out to the pub for me is a big deal and a source of huge anxiety.

 

Maybe some CBT to help me cope, but I appreciate that this isn't easy to get on the NHS.

 

Protection in employment through the Disabilities Act if I feel I need to use that.

 

I guess that's about it- I'm not expecting a wonder pill or cure.

 

HC

Share this post


Link to post
Share on other sites

Mod note: can we please deal with the issues rather than getting personal?

Why is it 'getting personal' when all I have done is give information and present my perspective? :unsure: Surely rude remarks, attacks across the forum, negative reputations on random posts and a non-acknowledgement of information are far more personal?

Share this post


Link to post
Share on other sites
The thing I most hope to gain should I ultimately receive a diagnosis would be some sense of calm and harmony, and an ability to just get on with my life a bit more, if that's not too wooly.

 

Specifically, this would come from a greater understanding of the way my brain works so I can reduce my stress levels by avoiding or coping with difficult things more effectively. This would help at home as there would be aprreciation that some things are difficult and distresssing for me in a way that seesm out of all proportion to my partner. For example; that simply going out to the pub for me is a big deal and a source of huge anxiety

 

It is possible to learn more by reading around.

We had three years whilst CAMHS debated about whether Ben had AS.I spent that time reading and here on the Forum.I am told by some professionals that I know more about AS than they do. :) I was even a moderator here briefly.There is almost no provision for adults with AS who are mentally well in most areas.Therefore even with a diagnosis it is likely that you would need to do the same reading.

 

There are a few counsellors within relate who have some awareness of AS and work with couples.However again if your partner and yourself wish to improve communication or understanding of each other it may well be a case of reading around.

 

 

The thing I most hope to gain should I ultimately receive a diagnosis would be some sense of calm and harmony, and an ability to just get on with my life a bit more, if that's not too wooly

 

I do not have AS and have never had a diagnosis of anything although it has been recognised that at one point I had anxiety,depression and probably PTSD.I have done a lot of work on the issues but have reached a sense of peace and a greater understanding of myself without a diagnosis.I had psychotherapy. CBT is known to be effective for people with AS however there is very little provision which is specifically tailored to the needs of people with AS.In any case unless an individual is able to self-fund counselling it is unlikely that a PCT or elsewhere would fund it if there is not clear evidence of moderate depression or anxiety.

 

Protection in employment through the Disabilities Act if I feel I need to use that

It is my understanding that the DDA only offers protection in employment related to difficulties that an individual can clearly demonstrate are related to the specific impact of a disability.It is also only required that an employer makes reasonable adjustments.

So it would only be relevant if you feel that because of possible AS you have difficulties in work and you feel your employer is discriminating against you in relation to those difficulties.

 

I am sorry if I sound negative.I am not saying whether you should or should not push for an AS diagnosis.However I would be less than honest if I did not try to give what I believe is a fairly limited list of the benefits of diagnosis.

 

We spent three years in psychotherapy every week as did Ben before his AS diagnosis.It was a painful and difficult experience.Ben wanted to know whether he had AS and does not regret deciding to go ahead with assessments.However he has been bullied specifically because of his diagnosis.I still have not returned to work because a large amount of time stil goes on pushing for reasonable adjustments to be made.

 

There are adults who speak on AS who consider themselves to have AS who have never had a formal diagnosis.

 

Karen.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...