Jump to content
Jannih

Going for a Diagnosis - At last

Recommended Posts

I have been posting on here for nearly 18 months now, and at last I have decided to go for a diagnosis.

 

It has taken me all this time to pluck up courage to see my GP. After all it's not like going in saying "my foot hurts, have a look, please" What made me get off my backside, was a letter I received saying that my GP was retiring at the end of the month and was going to be replaced by someone with a very Arabic sounding name. I know this Doctor may speak perfect English but on the other hand, maybe not. So I thought I better get in quick, as I do respect my present GP. She is very thorough, and hopefully won't fob me off.

 

I was chatting to an old friend, who is a manager of a care home for people with learning disabilities, today. For several years she kept hinting that I had a learning disability, but I was in denial and used to ignore her comments. She says she observed that I had a lot of autisitic traits and that as there was a family history, the doctor should take it seriously. She was very helpful today and gave me lots of tips and advice about how to approach the subject.

 

So wish me luck for tomorrow evening, everyone.

Edited by Jannih

Share this post


Link to post
Share on other sites

Good Luck for tomorrow, I'm sure you're GP will take you seriously.

 

When i went for a referal I didn't even know which doctor I was going to see as our practice doesn't alocate patients to doctors. I don't think i've ever seen the same one twice and so going in to tell them I suspected I had AS was so terrifying. As it happened the Doctor I got was really kind and just asked me a few questions about myself and then said he'd refer me to a specialist. He was even really sympathetic as i was fairly upset when i got in after having to wait in the waiting room for longer than i had anticipated. :tearful:

 

Let us know how it goes. :thumbs:

Share this post


Link to post
Share on other sites

Good luck, but I wouldn't stick all your hope on it - my doctor (slightly) reluctantly referred me (he thought if I'd gone 26 years without problem there was nothing to worry about) to an Occupational Therapist who knew nothing about it and just told me I was stressed. I eventually (1-1.5 years later) paid to see a specialist because I lost faith in the NHS (well I've never had much faith in it) and she diagnosed me - last week actually.

 

Just make sure that the person you see is a Clinical Psychologist because they will be more likely to know enough to diagnose. If you feel they don't take you seriously or don't understand the situation then look on the Autism Directory (http://www.autismdirectory.org.uk) and find a specialist that's reasonably close to you (I had to travel 3 hours to the closest that deals with adults). You may be able to get a referral; I paid because I could not wait, it cost me £480 but was money well spent.

 

Good luck.

Share this post


Link to post
Share on other sites

Congratulations on your ASD diagnosis Meethoss. :thumbs:

 

Good luck Jannih

Share this post


Link to post
Share on other sites

Hi there,

 

I've just booked an appointment to see my doctor about it on Monday. I am being been treated for general anxiety which has been a really quite persistent feature of my life. I started to take the possibility that I might have aspergers more seriously after finding that the symptoms tick a few more boxes than I first thought. I have been receiving CBT recently and the counsellor I have been speaking to suggested that I see a doctor about it.

My main concern is that the doctor isn't clued up about asperger's and that I am going to have to explain to him what it is.

 

All the best with your appointment!

 

Share this post


Link to post
Share on other sites

[

If you feel they don't take you seriously or don't understand the situation then look on the Autism Directory (http://www.autismdirectory.org.uk) and find a specialist that's reasonably close to you (I had to travel 3 hours to the closest that deals with adults). You may be able to get a referral; I paid because I could not wait, it cost me £480 but was money well spent.

 

Good luck.

 

 

I looked in the autism directory and could only see the Lorna Wing Centre offering services to adults. I didn't see any oHter diagnosticians listed.

 

Can you let me know of any. You might have to send a message to me privately .

Share this post


Link to post
Share on other sites

 

I saw my G.P. this evening. She was fairly sympathetic when I explained everything to her. I forgot to consult my notes and rabbited on a bit but I feel that I got across the important bits.

 

I mentioned The Maudsley Hospital to her as I know this is the only hospital which takes NHS adult referrals from around the country. I thought I would have to be referred by a GP, then onto a clinical Psychologist and then to the Maudsley. She seems to think I can be referred directly by a GP . Does anyone know who is right ?

Share this post


Link to post
Share on other sites
I thought I would have to be referred by a GP, then onto a clinical Psychologist and then to the Maudsley. She seems to think I can be referred directly by a GP . Does anyone know who is right ?

I'm pretty sure the Maudsley is a tertiary level service (you would need to be referred by a psychiatrist), but it may have changed/I may be wrong.

 

Share this post


Link to post
Share on other sites
I'm pretty sure the Maudsley is a tertiary level service (you would need to be referred by a psychiatrist), but it may have changed/I may be wrong.

 

I thought that, but had a look in the Autism directory last night, and it looks like I can be referrred by a GP after all.

 

I spoke on the phone to someone from the Maudsley Clinic about a year ago. They said that they were in process of getting more funding which would greatly reduce their waiting list. Perhaps they are now able to relax the referral criteria as a result.

Share this post


Link to post
Share on other sites

Hi Jannih, well done for making the decision to seek a diagnosis and approach your GP, not something that's undertaken lightly, but at least that first important step is made.

 

It would be great if your GP could refer you directly- fingers crossed for you.

 

Share this post


Link to post
Share on other sites
Hi Jannih, well done for making the decision to seek a diagnosis and approach your GP, not something that's undertaken lightly, but at least that first important step is made.

 

It would be great if your GP could refer you directly- fingers crossed for you.

 

 

Thanks lifeVoyager et Al.

 

I am so glad I have done it and got it out of the way. Here's hoping the rest will be a doddle, but I don't think so, judging others' expereinces.

 

 

Share this post


Link to post
Share on other sites

hi

 

I had, in the past, left a message on Lorna Wing's answering machine for a couple of times, absolutely to no avail.

 

you must be in the same regional area.

 

probably the same guy (ASD diagnostician) as I am seeing, maybe.

 

I had already heard so much about this diagnostician.

 

Jannih, in what way your friend thought you had LD?

 

you sound very astute to me!

 

all the best with your assessment.

 

x x x

Edited by flyingladybird

Share this post


Link to post
Share on other sites

useful info lol

 

Lorna Wing Centre & phone number is listed in NAS site.

I believe, it was organized by the famous Clinician/Author.

last time when I phoned, the answer phone was on, forever.

someone said, it's over-subscribed hence no reply from them.

 

I really don't know the truth. thought it's a bit odd not to return any messages.

 

xx

Share this post


Link to post
Share on other sites
Jannih, in what way your friend thought you had LD?

 

you sound very astute to me!

 

ASD is categorised as a learning disability even though an AS person might be intellectually superior in other areas.

 

My friend said she thought I had a "learning disability" or suggested it over a number of years, I tended to ignore her. This time when I saw her, just before Christmas, I questioned her her clsoely as to what she meant by this. She said that she thought I exhibited a number of autistic traits. The big one for her, was that she said she could not involve me in a meaningful conversation as I would zone out frequesntly and look like I was not listening. This problem nearly ended our friendship many years ago when she poured her heart out to me about a personal crisis. Fortunately, we are still in touch, just divided by geography.

 

 

Share this post


Link to post
Share on other sites
she could not involve me in a meaningful conversation as I would zone out frequesntly and look like I was not listening. This problem nearly ended our friendship many years ago when she poured her heart out to me about a personal crisis

 

I do this a lot and people sometimes notice. It's usually noticed in one-to-one conversations but I have been aware of one of my bosses in work looking at me when I zone out in management meetings, I guess because she's picked up on it. I'm usually able to stop it happening by listening quite intently and keeping my interest by asking questions. Sometimes people wonder why I ask so many questions but others take it that I am keenly interested in what they are saying and then talk more or reveal more. In fact it has led to many of my friends coming to me for advice - they often appreciate my complete bluntness and I've helped many a friend through a difficult situation. I'm often told that I'm wise beyond my years, but all I'm really doing is stating the obvious that seems to be clouded by their emotions whereas it is completely clear to me.

Share this post


Link to post
Share on other sites
I'm pretty sure the Maudsley is a tertiary level service (you would need to be referred by a psychiatrist), but it may have changed/I may be wrong.

 

 

You were right, Mumble. I had a copy of a letter from The Maudsely saying that I had to be referred by a psychiatrist / psychologist.

 

I saw my new GP today, with some trepidation, but he was OK and did not try to fob me off. He is going to do a psych. referral for me. He said that my previous GP, who retired in the New Year, wrote a very informative letter about me, to the Maudsley. I asked him for a copy of it. He obliged and printed it off for me. She had quoted almost word for word everything I said, using the examples I gave her. I was very impressed.

 

I feel sorry for the new GP as the previous one will be a hard act to follow.

 

 

Share this post


Link to post
Share on other sites

I am going for the psychiatric consultation next week, in order to get a referral to the Maudsley Hospital.

 

One of my friends suggested that I ask you guys, what I need to expect. I know many of you have been in a similar situation. Bearing in mind my GP is behind me and endorses a referral, does that mean they just have to "rubber stamp" it or will they, being psychiatrists, ask me lots of probing questions. If so what sort of things will I be asked and can you give me advice on what sort of things to look out for ?

 

Would they be interested in school reports etc at this stage ?

 

This friend seems to think that they might try and pin a mental health disorder on me because they do not deal with

"learning disabilities." She is being quite negative but I think she wants to prepare me for the worst scenario.

 

I would appeciate some input from you all, especially those who took the NHS route.

 

Thanks.

Share this post


Link to post
Share on other sites

I think the Maudsley does have a specialist autism team. Have you been referred to them, or a mental health unit instead?

Share this post


Link to post
Share on other sites
I think the Maudsley does have a specialist autism team. Have you been referred to them, or a mental health unit instead?

 

I haven't got as far as that. My GP has referred me to the local psychiatric team, as The Maudsley won't accept GP referrals. If I get through this stage of the process, then I will be referred to the Behaviour Genetics Clinic at the Maudsley

Edited by Jannih

Share this post


Link to post
Share on other sites

OK, I've just gone and read the thread properly :rolleyes:

 

It sounds as though your GP has referred you with a view to assessing for ASD, rather than assuming mental health issues. It does sound like you are on the right path.

 

Is the friend who is now putting you off the same one that told you she thought you might have ASD? Because that's a bit weird, and not particularly helpful.

 

I didn't get diagnosed by this route so I can't speak from experience, but I would have thought school reports would be good evidence against a mental health condition, and in favour of a lifelong learning disability.

Share this post


Link to post
Share on other sites
Is the friend who is now putting you off the same one that told you she thought you might have ASD? Because that's a bit weird, and not particularly helpful.

 

 

No, it's another friend.

 

She has done counselling training and I think she is trying to get me to think about how I would mentally/emotionally deal with an adverse decision on the part of the psychiatrist. She says I have to be determined to go forward and not back out at the slightest hurdle - she does not have a good opinion of the NHS mental health sector and thinks I might not be able to stand my ground with them.

 

Share this post


Link to post
Share on other sites
No, it's another friend.

 

She has done counselling training and I think she is trying to get me to think about how I would mentally/emotionally deal with an adverse decision on the part of the psychiatrist. She says I have to be determined to go forward and not back out at the slightest hurdle - she does not have a good opinion of the NHS mental health sector and thinks I might not be able to stand my ground with them.

 

I am not sure I would worry about an adverse decision. You seem to know what you are doing. Take some notes with you like you did for the GP and just try to relax. If it turns out that the psychiatrist disagrees, then that is just his / her opinion. You can always ask for a second opinion.

 

Zen

Share this post


Link to post
Share on other sites

We thought our daughter's diagnosis had to be by a tertiary level service (Sheffield) but there was a way round it. Our GP referred her to a consultant psychiatrist, the psychiatrist took a full history etc and told me we were quite right, our daughter fulfilled the criteria for diagnosis, which she went through with me. The consultant then went on to the Asperger's Service (the tertiary service) with our daughter's file, spoke to the person who made the diagnosis and they conferred. This way the Asperger specialist agreed the diagnosis. The consultant did this with more than one case as far as Im aware. This meant it didnt take quite so long, and it was fairly clear cut getting DLA and things like that.

 

But it may have a down side. There isnt an awful lot of help out there, and I did wonder if she had actually waited and seen someone at the Asperger Service herself (there wasnt enough funding in the budget during the year she went there) she might have got a better quality of support.

Share this post


Link to post
Share on other sites

Although I have been reading posts in here on & off for about a year, this is my first posting. It has taken a very long time to get an appointment at the Bethlem & Maudsley Hospital Behavioural Genetics Clinic. I was referred there almost a year ago following a local diagnosis of adult Aspergers (I'm 39) by a very gentle, sensitive & understanding psychiatrist & professor of psychological medicine who is attached to the occupational health department of my workplace. I have had long-standing difficulties primarily with social communication, perceptual experiences & anxiety/stress. & generally seeing & experiencing the world differently to most other people around me. Looking back to my childhood I think I probably had more of an autism/hyperactivity presentation, which has been modified by the re-socialisation that has occurred as a result of having worked in the statutory mental health services since I was 19.

 

In the last 2 years I began to experience a lot of bullying at work & eventually had a difference of opinion with a manager which resulted in him making a complaint about me & me being disciplined & being given an 18 month final written warning for, what I was told was an "error of judgement" & constituted gross misconduct - its a long story to go into but it was considered that I had refused to carry out what was deemed to be "a reasonable management request". I hadn't in fact refused to do anything, I had simply explained to the manager that the team was already 1 member of staff short on this particular day & therefore resources were such that I could not release another member of staff to him further depleting already depleted staff resources. Anyway, I don't do the whole smiling, stroking of others egos, showing interest in the banal personal information of others, fluttering my eyelashes & generally flirting... I just don't think to do any of these things, they don't occur to me, they seem tedious, pointless & exhausting... because of the wasted energy required just to hold these things in mind & all the planning as to how one is going to execute these things. Exhausting! A further outcome of the disciplinary was that I was demoted for 12 months & in effect lost £550 per month.

 

It has been an immensely difficult time. I have always struggled to understand others & trying to understand this situation I was totally lost. My general day to day anxiety, which is always there, increased dramatically & I started to feel very low in mood. I started to see a very understanding & insightful female Dr in the occupational health department of my workplace over a period of initially about 8 months. She did the Myers Briggs Type Indicator with me & it defined me as an INTJ, of which only 0.3% of the population are apparently, & it also highly correlated with Aspergers. An INTJ = The Scientist. This wonderful Dr then thought it might be helpful for me to see the resident psychiatrist, who I have already referred to earlier in my post... & after just 2 meetings with him he reached agreed that my overall presentation seems to be that of Aspergers... & referred me on for specialist assessment to confirm his local diagnosis.

 

Incidentally, I now believe my father was an Aspie, I think my brother is & I think his 4 year old son/my nephew is a high functioning Aspie. It's quite astounding. I didn't know anything very much about Autism/Aspergers until I started my BSC Psychology degree 2 years ago, then as soon as I started to read Baron-Cohen's work & Uta Frith's everything suddenly seemed to make sense & the missing jigsaw piece finally slotted into place. I have been very fortunate to have been able to meet with 2 very gentle, sensitive, supportive, insightful & understanding Dr's over the last 18 months. They have helped me to think about me & explore my difficulties & my strengths. One of the last things the female Dr said to me was that in months to come I'll be able to laugh at the fact that I am "a geek"! Both her & the Prof made recommendations to the service director that I no longer remain in front line clinical work but rather move into Research & Audit, & the service director just informed me that there's a 6 month national piece of audit work (a qualitative comparative analysis) for the women's services that he wants me to do. Incidentally, this service director is the person that disciplined me not quite a year ago! So, I should very soon be moving into an office possibly with just one other, instead of having to be in & around & constantly interacting with a team of 10 people, & I will have my own work station & space & peace to think & process & focus just on the project that I've been given to complete. I'm thoroughly pleased & relieved. At last people in my organisation are seeing who I am & where my differences, difficulties & strengths.

 

As for the assessment at the Bethlem - I saw my GP today & we spoke about the difficulty surrounding the referral. The Bethlem had initially written to my GP explaining that the referral had come from a tertiary service (the Prof in occupational health) rather than primary care. So my GP had then written a letter to the Bethlem in support of the Prof's referral. I then, months later, I think in Feb this year, contacted the Bethlem & they confirmed that they were happy to accept the tertiary referral because they had received the supporting letter from my GP (primary care) & that it is now 'just' a matter of my GP obtaining funding so that they can proceed. The administrator lady I talked to told me that once they had received confirmation of funding they would push me to the top of the list being as I've been waiting so long. The today my GP again brought up the matter of the psych referral being from tertiary services rather than primary - I had to be quite firm with her in my explanations that I am unable to see a psych from my local primary care services because I know them all & so for me there would be issues surrounding confidentiality... that the Bethlem have confirmed they are happy with what they already have... & that it is now just a matter of her (my GP) making an application to the Mental Health Commissioner of the Primary Care Team for funding. At last she said she will get a letter off to him today along with copies of the letters from the Prof. So... hopefully I should be having the specialist assessment in the next month or 2.

 

I realise I have written quite a lot... but its been a convoluted process getting the assessment... & I wanted to share some historical information leading up to it so that its possible to put it in some context. I hope its not been too tedious to read. And I hope it might be helpful.

 

Please feel free to ask any Q's at all... I am happy to share.

 

 

Share this post


Link to post
Share on other sites

It sounds like you have been incredibly lucky so far with the referral process, and that things are going well. I was sorry to read about the misunderstanding at work and it blows that it casued a demotion and disiplinary action.

 

I was lucky enough to be diagnosed as a child (especially lucky when you consider how long ago that was - am 32 now), but I have read enough on here to see that it can be a complete nightmare to get an assessment as an adult unless you pay to go privately.

 

Good luck with the assessment.

 

Zen

Share this post


Link to post
Share on other sites
It sounds like you have been incredibly lucky so far with the referral process, and that things are going well. I was sorry to read about the misunderstanding at work and it blows that it casued a demotion and disiplinary action.

 

I was lucky enough to be diagnosed as a child (especially lucky when you consider how long ago that was - am 32 now), but I have read enough on here to see that it can be a complete nightmare to get an assessment as an adult unless you pay to go privately.

 

Good luck with the assessment.

 

Zen

Thanks very much for your good wishes Zen. I wonder if you would mind me asking a little bit about what it means to you to have Aspergers? How are you with relationships? Do you work? How old were you when you were diagnosed? It is fortunate that you had people around you when you were younger who had some knowledge & understanding of the spectrum. Do you think your life would have been different without diagnosis, & if so, how

Share this post


Link to post
Share on other sites
Thanks very much for your good wishes Zen. I wonder if you would mind me asking a little bit about what it means to you to have Aspergers? How are you with relationships? Do you work? How old were you when you were diagnosed? It is fortunate that you had people around you when you were younger who had some knowledge & understanding of the spectrum. Do you think your life would have been different without diagnosis, & if so, how

 

Those are suprisingly difficult questions to answer really, but I will give it a go. I have always struggled to maintain relationships, but as I have gotten older I have become more adept at it. I have some friends, although I must admit to prefering my own company. I am getting married next year.

 

I work with vulnerable adults (I am sorry, I can't go into much detail due to the nature of my work), but I do enjoy my work very much and my Aspergers is a HUGE benefit, as it allows me to keep a purely professional frame of mind and complete detachtment. I don't get emotionally evolved with my clients, which is essential if you want to do my job for any length of time.

 

I was a mental health nurse for a while on a secure unit, and to be honest I wasn't very good at it (terrible at reading people), and I found the necessary interactions with patients to be exhausting. It got to the point very quickly where it was very dificult to force myself to go to work. It was a difficult decision to quit, especially as money was very much an issue at the time and I am not fantastic when it comes to the practical stuff (I have no idea how much is in my bank account at the moment, I just know it has been a good few years since they have written to me to tell me I am in trouble lol). I am much happier now, and I think that is the key, find something you enjoy, or at least can do without feeling stressed all the time.

 

I am not sure what age I was diagnosed, around 11 I think, but oddly it was an accident. You see I was born with congenital Anosmia (I have no sense of smell), and it was during an investigation for this that a doctor refferred me for an ASD assessment, as I couldn't maintain eye contact with him, while he was trying to poke an endoscope up my nose (no eye contact was quite reasonable a reasonable reaction given what he was doing I thought, but hey ho lol).

 

I am not sure my family really understood, I think they thought I was just very clever and very odd. None of them are very academic and part of my AS, makes me a natural bookworm and I find exams and studying extremely easy, having very good recall. So that was kind of another barrier on top of the social stuff which was difficult too. Also my siblings and my father are dyslexic, so again the whole bookish thing just wasn't great, but it was the best way for me to cope with anxiety.

 

If I hadn't of been diagnosed, I suppose life would have been quite different. I doubt I would have gone to university, as I hated school. I was bored all of the time, but I had the realisation that in part at least, my dislike of school was to do with my AS, and I went to Uni with the determination to make it an experience I would enjoy. I would have probably ended up working in IT (something I occasionally do anyway).

 

Aspergers can be a pain, it really can, but it also has its positive sides. Try to focus on those, because they really can be quite beneficial traits.

 

Zen

 

Share this post


Link to post
Share on other sites

Saw the psychiatrist today. He has decided to refer me to the Maudsley hospital for an Adult ASD assessment / diagnosis.

 

I was calm up to the last minute. I went in with all my notes. I gave him a copy, but he was more interested in hearing it my own words. I found it all very painfully difficult but he said that he is going to support my application. He thinks I am possibly more Aspergers than autistic.

 

That's one hurdle out of the way, thank God !

 

Share this post


Link to post
Share on other sites
Although I have been reading posts in here on & off for about a year, this is my first posting. It has taken a very long time to get an appointment at the Bethlem & Maudsley Hospital Behavioural Genetics Clinic. I was referred there almost a year ago.

 

 

It sounds to me that you might have got "lost"in the system, to have waited that long.

 

I phoned the Maudsley, yesterday, and was told that there was a waiting list of 4-5 months. Hopefully, they will see you soon.

 

 

Share this post


Link to post
Share on other sites
I am going for the psychiatric consultation next week, in order to get a referral to the Maudsley Hospital.

 

 

Thanks.

 

Wow you got that quick, DP still waiting on the psych referral from the GP in October 2009 and he has already seen 3 psychologists! How comes it was so quick?

 

Share this post


Link to post
Share on other sites

Jannih

 

Really pleased to hear such positive news - was wondering how you were getting on.

 

It must have been difficult going through everything but I'm delighted that you got a referral.

 

Barefoot

 

 

Share this post


Link to post
Share on other sites
Wow you got that quick, DP still waiting on the psych referral from the GP in October 2009 and he has already seen 3 psychologists! How comes it was so quick?

 

 

I don't know. I suppose it all comes down to the post codes lottery. Whether I get seen in 5 months is another matter. It's just that I phoned the Maudsley out of interest, and enquired about the waiting list. That does not mean I will be seen in 5 months

 

I must admit I was surprised to get this far. After hearing all these stories about the difficulties in getting NHS referrals, I feel quite lucky in deed, as I know there are people with severe problems who are more deserving, trying to get a consultation / assessment.

 

I hope your DP gets referred quickly.

Share this post


Link to post
Share on other sites

Does anyone know how long one has to wait between getting a general psychiatric opinion to being notified that the NHS will fund the ASD assessment ?

 

I had my appointment with a local psychiatrist in the latter half of April and have not yet heard if I will be referred to the Maudesley. The last thing I heard was that The Maudsley would accept me pending funding and that the local psychiatrist had applied to the Primary care Trust for this on 4th June.

 

We are in September now. I am wondering if it took this long for others. I am concerned as I know there are financial cutbacks and I think the longer it is delayed the less chances of funding.

 

I spoke to the psychiatrist by phone at the beginning of August and he seemed to think it could take 3 months from his pplication in June, but I still have not heard anything. It wasn't easy trying to get this information as I was given the run around i.e told to phone the Maudsley, they told me to phone the local clinic and the clinic told me to phone the Primary Care Trust and they in turn told me to go back to clinic. Eventually the Psychaitrist phoned me himself. All this happened on a day off and now I'm back at work I am not in a position to go making several phone calls.

 

I would be grateful if someone can give me an idea of how long it took them to get their referral.

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...