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pappy

Adult Aspergers assessment

65 posts in this topic

Hi all

I believe that I maybe an Aspie and wondered how difficult it is to get an assessment on the NHS. I know it was difficult to get an ADD assessment on the NHS, but wondered if the Asperger assessment was any easier to come by?

Furthermore, does anyone know of any assessors (NHS or private) within Merseyside? I'm from St.Helens btw.

 

Paul

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From experience I would say that it's best to start with your GP and to explain as clearly as possible why you think you are on the spectrum. The National Autistic Society included information on how to approach a GP in an information pack and I found that extremely useful.

 

It took my GP a lot of time and effort to find a Consultant Psychiatrist in the NHS area who would carry out the diagnostic work and I'm sure not every GP would have made the time so I was probably lucky.

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I went to my GP in July this year and explained to her my situation. She referred me to the 'Mental Wellbeing and Access' team. When I saw my sons clinical psychologist I talked to her about what i was doing and she informed me that apparently the government has decided that every district in the country should have an NHS department for adult diagnosis of ASD. Within a month of seeing the GP the MWA team had referred me to the nearest Autism Spectrum Centre, who felt my referral was appropriate for their service. They are still setting up, and there is a 6 month waiting list when they do start operating, but I'm on the list!

 

It seems odd with all the cutbacks that these centres are being created. Maybe its acknowledgement that there are more people with ASD than previously recognised?

 

Good luck.

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I went to my GP in July this year and explained to her my situation. She referred me to the 'Mental Wellbeing and Access' team. When I saw my sons clinical psychologist I talked to her about what i was doing and she informed me that apparently the government has decided that every district in the country should have an NHS department for adult diagnosis of ASD. Within a month of seeing the GP the MWA team had referred me to the nearest Autism Spectrum Centre, who felt my referral was appropriate for their service. They are still setting up, and there is a 6 month waiting list when they do start operating, but I'm on the list!

 

Wow! That's fantastic. Almost exactly a year earlier I was told by my GP that my local Health Authority was not undertaking adult diagnosis of ASD because of the cost, so what you were told appears to be quite a U-turn.

 

It seems odd with all the cutbacks that these centres are being created. Maybe its acknowledgement that there are more people with ASD than previously recognised?

 

Well, as my GP said at the time if it's true that one in a hundred people are on the spectrum it seems logical that there are a large number out there born too late for childhood diagnosis who would get a positive adult one.

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Visited my GP today, asked him to refer to assess me for Aspergers, he asked why I thought I had it, I told him and he said that he can't directly refer me to a psychiatrist, but will have to be referred to Open Mind and I should hear from them within 2-3 weeks.

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Well done, it takes courage to take that first step! 'Open Mind' sounds similar to 'MWA' team that I was referred to.

 

Jx

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Well done, it takes courage to take that first step! 'Open Mind' sounds similar to 'MWA' team that I was referred to.

 

Jx

 

Cheers, have you heard anything back from them yet?

 

Paul

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Visited my GP today, asked him to refer to assess me for Aspergers, he asked why I thought I had it, I told him and he said that he can't directly refer me to a psychiatrist, but will have to be referred to Open Mind and I should hear from them within 2-3 weeks.

 

Telephoned Open Mind last week to be told that I have been referred to Willis House, which is were I was assessed for my ADD.

I telephoned them today to be told that they had written to my GP a few weeks ago, basically saying that his practice would have to fund my asessment as they only automatically assess people with learning disabilities. So I'm gutted, I only hope that my GP is willing to do this.

Edited by pappy

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Cambridgeshire

 

Went to see a doctor in my GP practise and he said adults cannot be diagnosed, when they had sent my adult son for diagnosis, Made an appt to see differant doctor in practise and have been referred to cambridge class, awaiting an important

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Telephoned Open Mind last week to be told that I have been referred to Willis House, which is were I was assessed for my ADD.

I telephoned them today to be told that they had written to my GP a few weeks ago, basically saying that his practice would have to fund my asessment as they only automatically assess people with learning disabilities. So I'm gutted, I only hope that my GP is willing to do this.

 

*Update*

Phoned my GP 3 weeks ago asking what was gonna happen next. They said & did apply to the local PCT for funding of an assessment. Phoned this week asking for an update and was told PCT had written to Willis house and some funding was achieved. Phoned Willis house for confirmation to be told that they HAVE received full funding for an assessment and I will be contacted by them in the next week or so to go through with me what the assessment will comprise of etc and then appointments will be made. I'm so relieved and anxious at the same time lol.

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Well that sounds like VERY good progress!!!

 

It's understandable you are nervous too, but it sounds like they know what they are doing.

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Re: my assessment. I did all the legwork in trying to find where in Leeds there was a psychiatrist/psychologist who could refer me to Sheffield Asperger's Service.

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Really glad that things are moving forward for you, fantastic news!

 

I haven't heard anything yet, but not really expecting to until possibly Feb next year.

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Received a phone call today from some type of nurse, who told me that she will be coming out to me on 6th January next year and explain the assessment and carry out a part of it and I will then see other people for other parts of the assessment.

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I went to my GP in April this year, and they referred me on to the mental health team, i had an appointment with them in July, they then ageed to refer me on to the Adult Autism Assessment. I've had 3 assessments with them, I had a three hour cognitive assessment in August, then i saw the consultant in October and did the ADOS assessment, and finally in November both me and my partner were interviewed (think they used the DISCO) and i was given a diagnosis on 17th November. All in all its taken 8 months from seeing my GP to getting a diagnosis, i have to say i cant fault the NHS, i just couldnt believe how quickly its all happened.

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I received another phone call today from a speech/language therapist/professional from Willis House, i can't remember her title specifically, I think it had the word "language" in it. Anyway, she said she'd prefer to see me before my appointment with the nurse, so I'm seeing her on the 3rd January. It seems to be gaining momentum and I'm feeling even more anxious now lol.

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Had my first appointment today with the language/speech therapist, will be seeing her again on Thursday morning.

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How did it go?

It was alright. She had me looking at flip cards with multiple pictures and asked me questions about which described what etc. She also asked and filled in a lot of psychometric tests.

I went again today, which lasted longer and was similar to the appointment before, but there were more psychometric questionnaires.

She also explained to me how the other parts of the assessment will be carried out and by whom.

Tomorrow I am seeing the mental health nurse which will be a introductory appointment (I think) and she will eventually carry out the DISCO test.

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Saw the mental health nurse this morning. She tool some initial details regarding why I believe I have Aspergers and we talked a while . She briefly started the DISCO but said it would be appropriate to speak to my parents for it, however, because I am not on speaking terms with my family, she said she will look for other assessment material which doesn't need their input. However, she said that she could contact them without giving them the real reason she needs the info (i.e. she is a representative from my insurance company etc). She said she will try to arrange me an appointment with the psychologist for the cognitive test part before we carry out the DISCO, if not, we will keep to our appointment scheduled for 2 weeks time, which she wants my wife present.

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I went to my GP in April this year, and they referred me on to the mental health team, i had an appointment with them in July, they then ageed to refer me on to the Adult Autism Assessment. I've had 3 assessments with them, I had a three hour cognitive assessment in August, then i saw the consultant in October and did the ADOS assessment, and finally in November both me and my partner were interviewed (think they used the DISCO) and i was given a diagnosis on 17th November. All in all its taken 8 months from seeing my GP to getting a diagnosis, i have to say i cant fault the NHS, i just couldnt believe how quickly its all happened.

I just had a two hour assessment at the Sheffield Asperger's Unit and during that time my parents were interviewed. The consultant psycholigist, even though there wasn't much to go in the questionnaire that my parents completed, (they mostly answered N/A and No), still said I was autistic. Given that the unit at Sheffield is supposed to be one of some repute, I am surprised that the assessment was only brief - hey ho.

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I'm well pissed off. The nurse phoned me 10 minutes ago to cancel my appointment for tomorrow. She said she's been busy and hasn't spoken to the psychologist yet, but is hoping to do so tomorrow and she'll phone me tomorrow afternoon. :angry:

No explanation of why my appointment needs to be cancelled and she has had 2 weeks to speak the the psychologist. :wallbash:

Well the rest of my day is ruined now, i'm in such a downer :(

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I just had a two hour assessment at the Sheffield Asperger's Unit and during that time my parents were interviewed. The consultant psycholigist, even though there wasn't much to go in the questionnaire that my parents completed, (they mostly answered N/A and No), still said I was autistic. Given that the unit at Sheffield is supposed to be one of some repute, I am surprised that the assessment was only brief - hey ho.

 

They didn't even ask to see my parents and just interviewed my partner, i did bring copies of all my old school reports and such like, but was still surprised when they didn't ask to see my parents, they are both still alive and we're close so i was a bit unsure why they weren't asked to be interviewed. Im quite pleased though as they are terrible historians.

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I'm well pissed off. The nurse phoned me 10 minutes ago to cancel my appointment for tomorrow. She said she's been busy and hasn't spoken to the psychologist yet, but is hoping to do so tomorrow and she'll phone me tomorrow afternoon. :angry:

No explanation of why my appointment needs to be cancelled and she has had 2 weeks to speak the the psychologist. :wallbash:

Well the rest of my day is ruined now, i'm in such a downer :(

 

For anyone who's interested, the nurse never called me back, so I called her the following day only to be given the runaround and not speaking to her. Because of this, I contacted the speech therapist & asked her did she know which psychologist I was seeing, she did & I told her how unhappy I was with the nurses lack of professionalism and unreliability. She was genuinely annoyed and as she was working in the same building as the psychologist she heard that she was going to contact me, so she told me she would speak to her anyway to chase it up. The following day the psychologist called me to arrange my cognitive test for next Monday 30th January :)

Edited by pappy

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Being messed around does not surprise me in the least.... How did you find the assessment? Were you satisfied with it etc? :)

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I finally went to my GP at the end of september last year. It had taken me 6 years to get the courage up to go again and ask after a nasty experince with another doctor. I had gone to a different doctors, before I moved house. That visit had taken 2 years of fighting my anxiety to go and ask. The response I got was " You can't take a pill to cure aspergers!". And I was dismissed. So it kicked any confidence I had into the ground. After I moved, I had a little chat with a nurse at my new doctors during my "induction". She said that I should talk to a certain doctor at that surgery as that was more his speciality. That was a year ago. And like I said I went in september, with a small list of things I did that others didn't do or other people had noticed I did. I told the doctor how long it had taken me to ask and what had prompted me to think it was aspergers. He decided to refer me there and then to an aspergers clinic just down the road. I got a primary assessment appointment the last week of october. I was asked many questions and after 3 hours the lady told me she was almost certain I had aspergers and wanted me to return for a proper test a little later. I was asked on the 2nd of december to go in for a possible 5 hour test/ interview. I went there believing that whatever the outcome I wouldn't get to find out for many sessions and months if I had it or not. After the test, the lady smiled and said to wait 10 minutes while she conferred with her colleagues and she'd be back with my result. I had one of the worst panic attacks ever in that room, I was getting a diagnosis, today! She was gone for a while longer than 10 minutes but when she did she looked me carefully in the eye and said those magic words... "We all agree you have aspergers with a very high level of anxiety". I simply asked her "So all the things I do, the things I say, the way I upset people... it's not my fault? It's not something I can control" when she said "No, it isn't." I cried so hard. The relief was amazing. I feel I can move on, try to sort through my life.

Even now though I am still surprised how fast I got diagnosed. I am better for it. And happier than ever before in my life.

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From your writing it is clear that you had a bit of an ordeal to get to where you are now, and I understand the years of thinking it might be your fault (like I have thought that about me, and how lots of other's on here say similar things). It's also clear you were very relieved to get some answers at last - this is how I wish I felt - I wish I felt like how you described here:

 

She was gone for a while longer than 10 minutes but when she did she looked me carefully in the eye and said those magic words... "We all agree you have aspergers with a very high level of anxiety". I simply asked her "So all the things I do, the things I say, the way I upset people... it's not my fault? It's not something I can control" when she said "No, it isn't." I cried so hard. The relief was amazing. I feel I can move on, try to sort through my life.

 

I'm glad you are feeling positive though :)

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From your writing it is clear that you had a bit of an ordeal to get to where you are now, and I understand the years of thinking it might be your fault (like I have thought that about me, and how lots of other's on here say similar things). It's also clear you were very relieved to get some answers at last - this is how I wish I felt - I wish I felt like how you described here:

 

 

How did you feel? Didn't you get any feeling of relief after getting a diagnosis?

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No, didn't feel any relief at all.

 

From the moment I started learning self-awareness as a child, I've known things weren't right, and the older I got the more self-awareness of myself and the world around me I got, the more I knew something definitely wasn't right with me, knowing what that is - or rather, knowing what is the explanation for that feeling and some of my experiences did not help, it doesn't change much. I'm not so different to a lot of people on this forum - a lot of people have searched for the answer, searched for something that hits them and they just know what is wrong with them - I searched too, I just never looked at ASD's. I admit that the diagnosis has certainly explained a lot, it has helped me to understand myself more, but relief? No.

 

You ask how I felt... I felt angry, alone and confused, I didn't understand the dx at the time, I didn't think about it, I didn't think about the possibility of having AS, I just went and did the tests the psychiatrist wanted me to do, I went and talked in the interviews, I even managed to convince my parents to drive here for an interview with them, but all that time I wasn't thinking about AS - my frame of mind was like "whatever".

 

After, when the report was written and explained to me, I still didn't believe it, we had to have another appointment so I could ask "so is this report a diagnosis or just some report?" and that's when I got told that it meant I'd been diagnosed with AS officially. I didn't know what to think, I did a lot of online searching, found this forum, and then I totally lost the plot for about 3 months (which is why my join date of feb is much earlier than my first post date of about may cuz I forgot about the forum during those 3 months of going insane).

 

My mind just went on a endless movie reel of my life, every little thing that never made sense was suddenly illuminated in a new light, my mind did that for months and months, my life shown to me in super fast footage. It was only after that I was able to step back and look at this a bit more rationally - but I am still angry that at no point during the meetings around diagnosis did anyone ask if this was making sense to me (it wasn't) they didn't ask if I understood (I didn't) they didn't provide any support after (because they assumed I'd be relieved) I wasn't.

 

All they did, the only advice I got was to contact an autism/asperger's group based 30 miles away - when they know I'm agoraphobic and can't get to it - and that you have to pay to be a member!! And they told me to check the internet for the NAS site. That was it - so I was angry about that - especially when at the end of the report it says "to have future meetings to support me and to enable me to develop coping strategies" this did not happen and still hasn't.

 

My parents denied the dx, they still do, and probably always will - and this really hasn't helped - the few people I've told about my dx won't talk to me me about it - so I guess angry, alone and confused would be how I felt overall, and to a degree how I still feel - except I bury it as much as possible or people won't talk to me at all - and that's why I wish I felt like a lot of the newbies on here - I would give anything to feel relieved.

 

Sorry for long answer :oops: there wasn't any shorter way of saying it unless I just said what I felt without sort of explaining why :)

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It's sounds as if you've had a really raw deal and been let down by the professionals dealing with your case.

 

Like others on here, I read a great deal about AS and it was as a result of what I learned that I became convinced I was on the spectrum and asked for an official diagnosis, Initially I came across an article about three women with problems and as I read it I kept thinking "Well, I'm like that." and "Can it be that other people have the same problems?" and then, at the end it was revealed that they were all diagnosed as having AS. The relief that I wasn't alone, an oddity, but that there were others like me was an enormous relief. However, I needed confirmation that I was correct and the diagnosis gave me that additional relief.

 

I've learned not to care too much about what other people think. Both my parents are dead but I'm certain they would have been in denial and reactions from other tend to be either "Well, I'm like that and I'm sure many people are" or "I don't believe it, I've seen programmes about children with autism and you're not like that" so I prefer not to mention it to anyone who doen't have any personal experience - either themselves or from a family member.

 

Thank you for explaining so frankly and clearly why you feel as you do.

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Your welcome :)

 

I guess its as interesting to some people that I feel the opposite way - just like it intrigues me that so many people feel like you do - its all good in terms of understanding... I totally understand about not telling people - I've had people say similar things to me, to the point where its like I'm trying to justify myself - its not worth it sometimes is it.

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Being messed around does not surprise me in the least.... How did you find the assessment? Were you satisfied with it etc? :)

The assessment with the speech therapist was fine. Last Wednesday I had my first appointment with the psychologist who did part of an IQ test with me which I will be finishing on Wednesday. As for the nurse, I left her a message to contact me, which she did. She apologised for the delay with a plethora of excuses and asked me for my email address which she explained would allow her to contact me/update me quicker and easier. She said she was again going to phone the psychologist and would email me within 10 minutes, guess what? It's been 5 days and no email!!!! Do I need to say anymore about her?

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The sooner you contact your GP the better. From making an intial appointment with my GP to actually getting a diagnosis from clinical psychologists, I had to wait roughly a year and a half. Had i done this 15 years ago my life might be very different now.

 

Saying that the Northern Ireland health system is chronically underfunded.

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Finished the IQ assessment yesterday with the psychologist and spoke about a few things about my pessimistic/critical/loathing of myself. Was comforting & informative. I told her how I hadn't received an email from the nurse & she told me that it may be an intranet issue as she always has lots of problems with emailing outside the intranet. She also emailed the nurse or me. So now I'm waiting to hear from the nurse for an appointment. :/

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Finished the IQ assessment yesterday with the psychologist and spoke about a few things about my pessimistic/critical/loathing of myself. Was comforting & informative. I told her how I hadn't received an email from the nurse & she told me that it may be an intranet issue as she always has lots of problems with emailing outside the intranet. She also emailed the nurse or me. So now I'm waiting to hear from the nurse for an appointment. :/

 

Talk of which, the nurse phoned me today and my DISCO assessment is set for 27th February, yay!!

Can't wait for this to be over with though.

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am seeing my Clinical psychology this week for the 2nd then the 3rd time on my 2nd visit am doing jigsaw puzzles and draw boxes and other things dont no what happens after that

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