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Jannih

Going for a Diagnosis - At last

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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.

 

I was diagnosed in 1998 and remember it took a long while. I am prepared to look arrogant to say this

might not have changed now. Have you received any update as of October?

Edited by CEJesson

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I got lost in the NHS system for the 2nd time this year. I phoned the Maudsley to see if my assessment was forthcoming and once more they had not had a response to a letter they sent to my local mental health trust. The letter was sent at the beginning of June. I phoned the the local clinic, only to be told that the secretary of the psychiatrist, Dr. K, who took over my case from the one who did the initial consultation, knew nothing about me. Needless to say I was a bit upset and so I went there in person and asked to see the practice manager. Fortunately she was able to find a letter from the primary care trust which confirmed that they were still iin the process of making a decision re. funding. I told her that I had been removed from the Maudsley waiting list once before and that they should have acknowledged the Maudsley's correspondence.

 

After leaving the clinic, I popped in to my GP practice and asked for a repeat prescription for my arthritis. The receptionist told me that the GP might or might not want to see me and that she would call me at home and let me know if I could collect a prescription or whether I would have to see the GP.

 

On Tuesday I received a phone call telling me that an appointment had been arranged for me to see DR. C. That day came, and I went into the GP surgery and told them I was here for an appointment with Dr. C. They told me I was in the wrong place as Dr. C works in the mental health Clinic, just down the road. So I went there thinking that they would have news regarding the funding.

 

It turns out that the Maudsley or the Primary Care Trust contacted them again and requested that I be seen by the head psychiatrist. I was shocked to find myself in another consultation, for which I was not prepared. After I came away I was upset, as there were things I could have said to help my application, which I didn't.

 

Dr. C told me that she thought I probably was on the spectrum, but because I worked and had my own house, I didn't need help. She said I was very self aware and had successfully worked around my strengths and weaknesses. What I failed to tell her was that my coping mechanisms used in social situations were now unravelling and sometimes alienating people around me. With all the cutbacks, I am beginnig to think I may have to go private.

 

Sorry for the rant, but I needed to "talk" to someone.

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Good News

 

I have just received a letter from the Maudsley Hospital along with the Autism Quotient questionnaires for me and someone who has known me well for a very long time. There is an 18 week waiting list for an out patient assessment.

 

I really began to think that I would not get it, especially as the last psychiatrist I saw, thought I had done pretty well in managing my "problems" I haven't use the term "ASD" as I might not have it and won't know until after the assessment, but you know what I mean. The psychiatrist also told me that it would cost £1762. I am wondering whether the dear people at the PCT thought, " Ok, we are going to lose our jobs with the spending cuts, so who cares, and lets spend everything in the kitty before we get the chop"

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An 18 week waiting list is not so bad if you know you're actually on it at last!

 

Glad to hear you are getting somewhere.

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An 18 week waiting list is not so bad if you know you're actually on it at last!

 

Glad to hear you are getting somewhere.

 

 

Thanks Tally and everyone, you have all been very supportive.

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I've just started the process of getting a diagnosis so it's good to read this and know what to expect. I hope you get the answers you need.

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Diagnosis at Last

 

Last week, I was given a choice of 2 dates for an appointment with The Maudsley Behavioural Genetics Clinic. Today I was seen and assessed. Considering most of my difficulties revolve around sociability problems, I was surprised to be given a diagnosis of Attention Deficit Disorder with a possible mild learning disability ! They recognised that I had autistic traits but not enough to put me on the spectrum.

 

Although I recognised ADD traits, I am not sure that I match all of them.

 

They have suggested a more in-depth ADD assessment, plus they took blood for possible Fragile X and any other related genetic disorder.

 

They have suggested CBT, Ritalin, following the in-depth assessment.

 

I am at this moment in time, trying to get my head round this unexpected diagnosis.

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Yes it certainly was a lot to take in. I had no idea that I might possibly have problems around ADD/ADHD. I am keeping an open mind, but the first thing I did, was look it up on the internet. I must admit there are things that fit but also things that don't add up. I will go for the in depth assessment, if one is arranged.

 

Now I'm not on the spectrum, can I still hang around on this forum ?

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Of course you still belong here! Anyway they did acknowledge some autistic traits!

 

I guess you could always decide on a secind opinion at some point, although they don't make these things easy!

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I have given it lots of thought over the weekend.

 

To qualify for an Aspergers diagnosis, I would have to have problems with things like eye contact etc. which is one of the triad of impairments that has to be present. I maintained eye contact and I used my hands when trying to explain something. I think this is what disqualified me. They accepted that I have problems with small talk, empathy and social imagination.

 

I am beginnning to see why they felt that I had what they called an attention related disorder, which needs further investigation.

I was straight on the internet when I got home. There are sub types of ADHD I think I might have the inattentive one, or the one that goes with impulsivity. I have never seen myself as hyperactive. If anything I needed a rocket up my backside to sometimes get me going! It does not apply so much now but I used to be a bit lary and over the top, usuallly over compensating for my social difficulties.

 

For a long time I have always assumed my sister was autistic, and still do,but it's interesting to note that her problems were noticed due to hyperactivity at school. She could not sit down to listen to a story and would dance to the hymns in assembly! This was in the 1960s. She reminded me that she used to run everywhere and not walk. This is something I used to do as a child / teenager, probably well into my 20s.

 

I am not going to challenge it because I'm beginning to think they may have a point. I have had the time to digest what was said and I will wait for the report. It should come through in a month.

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Apparently people with ADD (inattentive type) are often not picked up compared to those with ADHD (hyperactive type) because although they struggle to focus it's often not as obvious (because they will sit still but daydream, so it's harder to tell that they're not actually paying attention, whereas a child who is making noise or moving around will obviously draw more attention... towards their inattention).

 

I am autistic but I have a lot of ADD traits and I remember often having no idea what I was supposed to be doing in school because I had been daydreaming. I still get teased a lot (which bothers me, actually) for how long it takes me to get ready, but that's because I daydream so much that getting showered and dressed quickly is almost impossible.

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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 ?

 

Sheffieled Asperger's is also a unit which diagnoses adults who may live in different parts of the country.

 

As far as getting a diagnosis, I initially went to my GP, who didn't dismiss my idea that I might have AS. I did all the leg-work as far as finding a clinical pyschologist to assess me. He then referred me to Sheffield Asperger's Unit.

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I have given it lots of thought over the weekend.

 

To qualify for an Aspergers diagnosis, I would have to have problems with things like eye contact etc. which is one of the triad of impairments that has to be present. I maintained eye contact and I used my hands when trying to explain something. I think this is what disqualified me. They accepted that I have problems with small talk, empathy and social imagination.

 

I am beginnning to see why they felt that I had what they called an attention related disorder, which needs further investigation.

I was straight on the internet when I got home. There are sub types of ADHD I think I might have the inattentive one, or the one that goes with impulsivity. I have never seen myself as hyperactive. If anything I needed a rocket up my backside to sometimes get me going! It does not apply so much now but I used to be a bit lary and over the top, usuallly over compensating for my social difficulties.

 

For a long time I have always assumed my sister was autistic, and still do,but it's interesting to note that her problems were noticed due to hyperactivity at school. She could not sit down to listen to a story and would dance to the hymns in assembly! This was in the 1960s. She reminded me that she used to run everywhere and not walk. This is something I used to do as a child / teenager, probably well into my 20s.

 

I am not going to challenge it because I'm beginning to think they may have a point. I have had the time to digest what was said and I will wait for the report. It should come through in a month.

Jannih, I hold eye contact, (sometimes), however the clinical psychiatrist who did my follow up sessions at Sheffield, told me that it's as if I 'learnt' how to look people in the eye. I lack self-motivation. I can also be impulsive (for example decideing to see a Heather Peace gig in Nottingham) and then bittely regretting my actions later; for example I contacted the Prime Minsiter's Office, whilst he was in Opposotion and asked if he wanted to visit my area of Leeds. When someone got back to me and said whata great idea it was, I started to panic/cry.

 

As a kid at primary school, whenever my classmates and I had a seesion in the swimming pool at our school, I was usually the last one to finish changing after the session. If you think you have AS, then try and get a second opinion. Have you done the AQ Test? I have and scored 36.

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If you think you have AS, then try and get a second opinion. Have you done the AQ Test? I have and scored 36.

 

 

I did the AQ Test and scored 32. I know I'm borderline so that might be another reason for not picking it up. However, I am aware that the Maudsley has a good reputation and the doctor congratulated me on getting that far!!

 

I will wait for the written report and then decide what to do regarding a second opinion. Until then I will keep an open mind.

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Glad to hear you managed to overcome some pretty annoying-sounding hurdles. Thanks for sharing too. I've just been to my GP to start a diagnosis process myself. (I went once about 2 months ago, but the GP - a different one to this time - just gave me a print-out of AS symptoms, sent me on my way, and said he'd talk to his psychiatrist friends about it. Not heard anything off him since, the swine!) I made a list and everything this time - I made one last time, but I was too embarrassed to mention it. The GP asked me to read it out, so of course I just grinned and handed it to her. After much mumbling, she kept my list and said I'd hear something in the post about a referral. My first thought on leaving was "I've made a terrible mistake" and how I'm imagining everything and I'm gonna look silly and even if I have it then I can just deal without a diagnosis and so on and so forth. I'm sure I'll be glad I did it once this embarrassment wears off. At least I can stop umming and arring about it now. The only thing that worries me is that my list is a bit vague in places because I intended to talk through it with the GP. I basically copied the Triad of Impairments bit from the NAS site and put examples of my bits in brackets. Some dude might just look at it and go "He's just copied this off the website!" Never mind. Fingers crossed!

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I did the same as you; I copied the triad of impairments, then underneath each one, provided examples of my difficulties. They were printed in red.

 

Do persevere with getting a diagnosis, because you can confidently move on and address your problems more effectively. Let's face it, I was convinced I had Aspergers. If I had depended purely on self diagnosis, I would not get far, as it turned out my problems were related to a different condition which requires a different approach/ treatment etc.

 

BTW. My premliminary diagnosis report hasn't arrived yet, but I am told is in the post. Will keep you informed.

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North Wales, it seems, is not the place to be. Got called in to see my GP as he'd had a letter off the local mental health people. Due to cuts in funding, they don't have the man power to assess me. Ever. They did give me a phone number for a local support group, but I could've found that on Google really. The GP, who was very nice about it all, then went on to tell me about how it might not be Aspergers anyway. As I'm starting Uni this year, I've not got the money to go private. Bit annoying, but I'll just keep on doing the GF/CF diet thing and lurking about online for advice. I feel loads better about everything being able to read about it and this diet's magic. At least now I don't have to drag the parents in for a reference!

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