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Si_82
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05 Oct 2013, 2:45 pm

After more than a year since I started joining the dots and started thinking I might well have Asperger's syndrome, I finally attended an assessment yesterday afternoon which culminated in the doctors confirming that they were indeed diagnosing ASD (as they are apparently not using 'AS' as a diagnosis any more).

I have been driving myself crazy wondering if I have been reading too much into my problems and drawing false conclusions so in many ways this was not news to me but it was incredibly important that I had an official answer so that I could stop wondering and talking myself out of self-diagnosis.

The assessment was very formal and quite intimidating for myself as well as my wife and my mother both of who I brought along to provide information and perspectives which might help. Walking into the room we were faced with a psychologist, a doctor and a third woman who appeared to be along for the ride and to observe in some unspecified capacity. The assessment consisted entirely of interview and none of the tests I was expecting to undertake. After 2 hours of interrogation which surprised me with the number times we had to concede that some issue or other didn't, in fact, affect me much, I was told that I was being diagnosed with Autistic Spectrum Disorder and, were they to still be using the terminology, I would probably fall into the Asperger's camp.

I had spent so long preparing myself for them telling me that I had some traits but didn't quite meet the criteria (I thought that was likely for some reason) that I was a bit taken aback to be told I sat somewhere in the middle of the spectrum. I suppose that does correspond to how I had been placing myself in that, in many ways, I am pretty high functioning (Good job, married etc) and yet I have some issues that are usually associated with the lower end of the spectrum. I would say this might simply indicate the linear spectrum paradigm for ASDs is not quite right and the situation is a lot more complicated and multidimensional.

However, I am digressing. Yesterday was one of the most important days of my life and I am still digesting this information and the change of self-identity from "suspected, maybe, possibly a bit Asperger's" to simply "autistic" (And, yes I know it's not The Definition of me but it is part of my identity). Only my immediate family know at the minute so just wanted to get it off my chest a bit. Thanks for reading.


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franknfurter
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05 Oct 2013, 2:59 pm

hey, nice to know that you have finally gotten your diagnosis, would you say you feel happier now you have diagnosis, I have been going through the am I aren't I thing for a while and am thinking whether to go for a diagnosis.



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05 Oct 2013, 3:05 pm

Thank you for posting your experience, as I'm in the UK also and I assume the assessment situation described will be a process I will be faced with too.

And well done you -- it must indeed be an enormous relief to know that you're not just fooling yourself or making too much of traits you felt indicated what you now know for sure; I can imagine that must be a very validated feeling and a relief in many ways.

Two hours of interview? Yikes. That's a long time to feel interrogated. I have to say, the scenario sounds very, very daunting to me.

I'm a little worried about having nobody to bring to my interview. There's literally nobody who knew me when young, except for a school friend who might have vague recollections of how I was in class. I might ask him if he does and if he'd be willing to come along as someone vouching for my own memories of my childhood self. This stuff is why I hesitate to pursue the evaluation you've just been through -- they'd literally have to take my word for early memories of my younger behaviour.

It's very interesting that they deem you in the middle of the spectrum even though you had felt that you couldn't be that far in, having lived a very functional life in practical ways -- that's interesting. They also seemed to challenge you regarding impairment as if trying to get ready to tell you you're not on the spectrum, but still came to the conclusion you are, this is all very interesting.

Thanks again for describing the process here in the UK; I'm trying to decide when to do this myself.

Did you approach your ordinary GP with the request to be assessed? How was he or she about it? How long did it take between asking your GP to see a specialist, and the day of the assessment? Do they give you anything on paper just in case you ever have to show "proof" in an emergency situation, or anything? Or if something ever came up, you'd just ask your doctor to confirm that you are formally diagnosed?

Once again, well done, this must be a load off your mind! It sounds a little daunting but you got through it. . :salut:



Si_82
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05 Oct 2013, 3:20 pm

franknfurter wrote:
hey, nice to know that you have finally gotten your diagnosis, would you say you feel happier now you have diagnosis, I have been going through the am I aren't I thing for a while and am thinking whether to go for a diagnosis.


Thats such a personal issue that only you could decide if you need a diagnosis. In my case, I have lived to 31 acutely aware that there was something 'wrong' with me and never having a name for it that an opportunity to finally get a professional diagnosis is something I just could not pass up.

Over this last year I have been able to take the sharp edges off the AS question by telling myself that I might not even have it. Now I cannot do that and it really does feel a little strange and almost surreal to change it from possibility to fact. That said, I needed an answer and I feel stronger and more in control to at least have this knowledge. This thing has been such a massive and confusing part of my life that I needed an answer - It you feel the same I recommend you bite the bullet. Knowledge is power. :)


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Si_82
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05 Oct 2013, 3:37 pm

BirdInFlight wrote:
Thank you for posting your experience, as I'm in the UK also and I assume the assessment situation described will be a process I will be faced with too.

And well done you -- it must indeed be an enormous relief to know that you're not just fooling yourself or making too much of traits you felt indicated what you now know for sure; I can imagine that must be a very validated feeling and a relief in many ways.

Two hours of interview? Yikes. That's a long time to feel interrogated. I have to say, the scenario sounds very, very daunting to me.

I'm a little worried about having nobody to bring to my interview. There's literally nobody who knew me when young, except for a school friend who might have vague recollections of how I was in class. I might ask him if he does and if he'd be willing to come along as someone vouching for my own memories of my childhood self. This stuff is why I hesitate to pursue the evaluation you've just been through -- they'd literally have to take my word for early memories of my younger behaviour.

It's very interesting that they deem you in the middle of the spectrum even though you had felt that you couldn't be that far in, having lived a very functional life in practical ways -- that's interesting. They also seemed to challenge you regarding impairment as if trying to get ready to tell you you're not on the spectrum, but still came to the conclusion you are, this is all very interesting.

Thanks again for describing the process here in the UK; I'm trying to decide when to do this myself.

Did you approach your ordinary GP with the request to be assessed? How was he or she about it? How long did it take between asking your GP to see a specialist, and the day of the assessment? Do they give you anything on paper just in case you ever have to show "proof" in an emergency situation, or anything? Or if something ever came up, you'd just ask your doctor to confirm that you are formally diagnosed?

Once again, well done, this must be a load off your mind! It sounds a little daunting but you got through it. . :salut:


Thanks, it really is a relief, I cant begin to tell you. Though it is going to take a while to process I think. I did simply ask my GP for assesment. They asked a brief explaination of why I thought I had AS and then started the process. I was expecting it to take 2-3 months...it took over 12 and was tough going with all sorts of visits to rule stuff out and push the trust for funding. I imagine they are used to sometimes not having parents to discuss childhood behavior so just do what you can. I do know that early development is pretty key to the diagnosis from what I understand.

I will be getting a full written report providing lots of details about how they are diagnosing me in a week or so. I also took them up on an offer of a simple "He has ASD" type letter that I can give to my employer without all the gory details discussed in the interview.

As for the interview itself - It was intense and deeply personal but I was preparing for a whole year so was not too phased by the whole think - my wife and my mother were both a bit flustered i think though.

Good luck and please don't let me put you off getting your answer, I do not regret going through it in order to know myself better.


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05 Oct 2013, 3:49 pm

Congratulations on getting your diagnosis. It seems to vary depending on where you are. I was diagnosed with Asperger's in June, it took two years and I haven't got my final report yet. Hopefully I'll be getting it at the beginning of November. It sounds like the process was more simple for you, I had to have a lot of appointments with a lot of talking, and I also had to do several tests including an IQ test. Hopefully you will get the support that you need, and it will have a positive effect on your life.



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05 Oct 2013, 4:03 pm

Si_82 wrote:

Thanks, it really is a relief, I cant begin to tell you. Though it is going to take a while to process I think. I did simply ask my GP for assesment. They asked a brief explaination of why I thought I had AS and then started the process. I was expecting it to take 2-3 months...it took over 12 and was tough going with all sorts of visits to rule stuff out and push the trust for funding. I imagine they are used to sometimes not having parents to discuss childhood behavior so just do what you can. I do know that early development is pretty key to the diagnosis from what I understand.

I will be getting a full written report providing lots of details about how they are diagnosing me in a week or so. I also took them up on an offer of a simple "He has ASD" type letter that I can give to my employer without all the gory details discussed in the interview.

As for the interview itself - It was intense and deeply personal but I was preparing for a whole year so was not too phased by the whole think - my wife and my mother were both a bit flustered i think though.

Good luck and please don't let me put you off getting your answer, I do not regret going through it in order to know myself better.


Thanks for that information -- wow, it took 12 months, and another person here says it took two years for her! This is a long time to be in the process, and the multiple appointments sound like a lot of intrusion for adults with work and families. It's still worth it to have confirmation, but still, a lot to go through.

I must say it all scares me even though I'm very glad to hear in detail what is entailed. If I may ask, what general region of the UK are you in? No need to be specific, just northeast/southeast/southwest, that kind of thing. I'm in London and wonder if the length it all takes place over will be shorter here or in fact longer due to more people statistically on the wait list.

.



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05 Oct 2013, 4:25 pm

Good on you for going through the process and finally finding the relief of knowing what has been making your life the way it has been.

I also got my diagnosis in September after considering the possibility since last year. I'm now waiting for my report. I think it's a good idea that you are getting a brief letter as well as a full report. I might ask for that, too.

I'm in Australia. I had three one-hour sessions for the diagnosis. Getting to the stage of actually making an appointments with a suitable psychologist was quite a time-consuming and frustrating process. I had to waste my time and money for a wrong doctor who wasn't familiar with the diagnosis of ASD.

I think the best thing about the diagnosis is that you finally have an explanation for your difficulties with which you have been living all your life. I used to feel guilty for "not trying hard enough" and feel ashamed of being a well-disliked friendless person. It's such a relief that the vague feeling of something being wrong with me is finally explained. I'm sure that's how you are feeling now, too.



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05 Oct 2013, 6:12 pm

Only a couple of months ago, I was diagnosed with specifically Asperger's Disorder, so it is clear that people ARE in fact using that classification still in some areas. When I found out about all of this, I was kinda thinking that maybe I was over-thinking my traits as well, and that maybe I just had a similar PDD-NOS, but I do have Asperger's Syndrome, soooooooooooo that's interesting to know about after so much researching about this. My mom entirely agrees, and my counselor asked me to describe the way I feel about knowing that I'm diagnosed, and I didn't know what type of reaction I was supposed to say at the moment, but now I am reacting.


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05 Oct 2013, 7:24 pm

The first I ever heard of Aspergers was 12 months ago (early October). I was reading a book on hormones and a reference to Aspergers was mentioned which described me pretty well.

I don't know why, but I decided to find out if I had this thing. It took me 2 weeks to find a local psychologist who specialisted in Aspergers/Autism in adults. One introductory meeting and a diagosis meeting, and I was fully diagnosed as having Aspgeres on 6th November 2012 (about 4 weeks after first learning of it).

I had no idea, and no preconceved ideas about weather I had it or not. I just fitted the description so well and couldn't live wonding if it might be true, so I got a qualified profesional to say yay, or nay. She said yay. She said I was well above the 60% cutoff for the Aspergers diagnosis.

I suppose not know zip about it helped the diagnosis. Since then I've read every book I could find and every online article I could find. I've found Wrong Planet to be the most useful and informative reference for Aspergers. Here I found explanations that just don't exist in books. The books are written by NT's and they don't understand us, even though they write about us.



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05 Oct 2013, 8:28 pm

GregCav wrote:
She said yay. She said I was well above the 60% cutoff for the Aspergers diagnosis.


What is "the 60% cutoff"?



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05 Oct 2013, 9:05 pm

starkid wrote:
GregCav wrote:
She said yay. She said I was well above the 60% cutoff for the Aspergers diagnosis.


What is "the 60% cutoff"?


It means he's/she's about in the 60th percentile of AS/ASD people. It means that the ones with a lower percentile have either less severe or less present traits of AS, and the were above him have more present or more severe traits of AS.
I am in a lower percentile; it's the 22nd percentile, I believe.
On a slightly unrelated note, all percentiles of AS are still 100% credible.


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Si_82
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06 Oct 2013, 12:57 am

serenaserenaserena wrote:
Only a couple of months ago, I was diagnosed with specifically Asperger's Disorder, so it is clear that people ARE in fact using that classification still in some areas


Of course. I really only meant to suggest that these particular doctors were no longer using Aspergers as a diagnosis. In the uk we tend to stick to the WHO way of doing things and that is moving to ASD over AS but not officially until 2015. I think my doctors thought that they might as well give me a diagnosis that is not about to loose its medical meaning.


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Si_82
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06 Oct 2013, 1:02 am

BirdInFlight wrote:
Si_82 wrote:

Thanks, it really is a relief, I cant begin to tell you. Though it is going to take a while to process I think. I did simply ask my GP for assesment. They asked a brief explaination of why I thought I had AS and then started the process. I was expecting it to take 2-3 months...it took over 12 and was tough going with all sorts of visits to rule stuff out and push the trust for funding. I imagine they are used to sometimes not having parents to discuss childhood behavior so just do what you can. I do know that early development is pretty key to the diagnosis from what I understand.

I will be getting a full written report providing lots of details about how they are diagnosing me in a week or so. I also took them up on an offer of a simple "He has ASD" type letter that I can give to my employer without all the gory details discussed in the interview.

As for the interview itself - It was intense and deeply personal but I was preparing for a whole year so was not too phased by the whole think - my wife and my mother were both a bit flustered i think though.

Good luck and please don't let me put you off getting your answer, I do not regret going through it in order to know myself better.


Thanks for that information -- wow, it took 12 months, and another person here says it took two years for her! This is a long time to be in the process, and the multiple appointments sound like a lot of intrusion for adults with work and families. It's still worth it to have confirmation, but still, a lot to go through.

I must say it all scares me even though I'm very glad to hear in detail what is entailed. If I may ask, what general region of the UK are you in? No need to be specific, just northeast/southeast/southwest, that kind of thing. I'm in London and wonder if the length it all takes place over will be shorter here or in fact longer due to more people statistically on the wait list.

.


Im in the northeast so not too sure what it's like in London.


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06 Oct 2013, 4:56 am

Since you are using "Aspereger" in your description I will go by that. I was where you are today August 26 of this year from what I now consider my second birth day. One of the most emotional days in my life. Still gives me chills thinking about it. Yeah you will need time to process it. If August 26 was the big emotional earthquake there have been plenty of aftershocks large and small since.

A person in the middle of the spectrum having a good job and marriage that is something to be really proud of. You must have incredible perseverance and willpower. You earned every bit of the relief and joy you are feeling.

What was you testing like? You told us about your first day and today. What was going on in between for 12 months?

Thank you for sharing this day with us,
Happy birthday


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Last edited by ASPartOfMe on 06 Oct 2013, 2:23 pm, edited 1 time in total.

Si_82
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06 Oct 2013, 6:12 am

ASPartOfMe wrote:
Since you are using "Aspereger" in your description I will go by that. I was where you are today August 26 of this year from what I now consider my second birth day. One of the most emotional days in my life. Still gives me chills thinking about it. Yeah you will need time to process it. If August 26 was the big emotional earthquake there have been plenty of aftershocks large and small since.

A person in the middle of the spectrum having a good job and marriage that is something to be really proud of. You must have incredible perseverance and willpower. You earned every bit of the relief and joy you are felling.

What was you testing like? You told us about your first day and today. What was going on in between for 12 months?

Thank you for sharing this day with us,
Happy birthday


Thank you, I'm still trying to figure out how I feel but I'm sure this is a positive step.

Most of the year was spent chasing up application for funding with my gp. A few months ago I had an appointment with the local mental health clinic which was to rule out other non-developmental causes. This was discussion and retrieval of childhood medical records. I didn't really have to do any tests at all. I suppose if they get their answers another way, they don't need to.

If their assessment is correct I suppose I have done quite well considering. That's an odd thought as I tend to focus on my weaknesses as I have always compared myself against NTs.


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Aspie Quiz: AS129, NT80
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