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mysti

Appointment advice & support

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mysti

About 4 years ago I was diagnosed as being on the autistic spectrum. The specific diagnosis I received was PDD-NOS because I was told that I didn't have all of the traits necessary for a diagnosis of Asperger Syndrome. I believe that this is an incorrect diagnosis (which was made partly due to the difficulties I had expressing myself in the session following a migraine that morning) & that I do have Asperger Syndrome. Having the correct diagnosis is very important to me & something that I've been talking to my psychologist (who I see primarily because I have significant physical health conditions which have an impact on my mental health) about. She believes I fit all the categories of traits for Asperger Syndrome so wrote a letter explaining this to the assessment service who have agreed to see me for a follow up appointment next month with a view to changing my diagnosis from PDD-NOS to Asperger Syndrome. I'm both excited & apprehensive about this appointment as I feel it's a chance to get the correct diagnosis but know I'll be upset if it doesn't work out. So if anyone has any advice or words of wisdom regarding preparing for or attending the appointment then I'd be very grateful but I think I'm just looking for a bit of support. I hope it's not too cheeky of me to ask for that, I know I don't post much but I'm a long time lurker & sort of feel like I 'know' those of you who regularly post here. Thank you.

Edited for typos.

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Dingo

For my assessment I wrote a really long document where I wrote down everything that I could think of that was related to ASD.  Every experience or way of dealing with things or how I spend my free time or what things I'm good at and what things I struggle with.  It ended up being pretty long.  I'm not sure, but I think it was around 10 pages long.  I was able to email it to my doctor so she could read it before our appointment.  I had a lot of trouble thinking of things during out appointments, so it was a lot easier to write it all down and show her and let her read it and then she discussed all my points with me.

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mysti

Thanks for the prompt reply, I think I'm definitely going to make some notes beforehand.

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RiRi

I have seen you around the forum, lurking so I guess I would be one of the people that you sort of "know" :lol: At least I hope I am. :) I think what Raziel has mentioned is good. When I did my assessment, I had trouble coming up with a list of things that would be considered Asperger's and I looked up online for a list of girls, I'm not sure if that was helpful or not, but you can look at that if you're having trouble coming up with things. I think more efficiently though, you could use the DSM-5 and look up Autism Spectrum Disorder, right there, they have exactly what they look for to give you a diagnosis. I was paying close attention to that one when I was being diagnosed. The main thing I was worried about when getting diagnosed was making sure that the psychologist knew the syndrome was there during my developmental period. You can go by each category and subcategory and try to think how you fit each category and give examples in your document. I'm not sure if it would be a good idea to specifically write out the chart, I didn't do that so I wouldn't want to give you the wrong information. I just had the chart in my head and needed to make sure I fit all the categories. When you received your PDD-NOS diagnosis, did you get an explanation as to which categories/or why they believed you didn't Asperger's syndrome diagnosis? I was thinking that on top of the other traits, maybe you can look into that and type out how you do fit that category that you were missing? Regardless of what you end up doing, I wish you the best of luck with your follow up appointment.  :)

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mysti

Hehe, yes you are one of the people I feel like I know Anna :) Your posts often make me smile.

I'm going to remind myself of the diagnostic criteria & traits in females before my assessment. And I'm going to make a list of some examples, paying particular attention to the category of traits my previous assessment said I didn't fit.

Thank you for your kind words, I'm make sure to update you all on how it goes.

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AutismUnrestricted

Hi Mysti. good luck for your appointment. So hope you get the correct diagnosis.

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not around here anymore

I hope it's not too cheeky of me to ask for that, I know I don't post much but I'm a long time lurker & sort of feel like I 'know' those of you who regularly post here. Thank you.

It isn't cheeky, you are more than welcome to ask :)  I never saw you as a "lurker"  :P  :lol:

 

I definitely think that making notes before your appointment is a good idea. I know that it helped me. Just writing down my traits was quite an eye-opener, it showed I have more traits than I thought in the first place because they were all written down in one place.

 

Good luck  :)

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mysti

Thank you both. And thanks for making me feel welcome Phil :)

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not around here anymore

Thank you both. And thanks for making me feel welcome Phil :)

Your welcome.

 

Feel free to ask me anything else regarding the diagnosis process if you have any further questions  :)

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Nesf

I went to the interview armed with a list of traits and which symptoms I thought I had, examples and how they affect me, but also my mum came along and spoke to him and told him that she had researched AS and was sure that I had it.

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mysti

Thanks Nesf, I think that's how I'm going to approach it too.

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RiRi

mysti, is your mom also coming with you or is it just you?

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mysti

I had my follow up appointment today with Professor Simon Baron Cohen. I was well prepared with lots of evidence that I think shows how I fit the diagnostic criteria & I was ready to try to persuade him that I do have Aspergers rather than PDD-NOS but it wasn't neccessary. He looked over my previous diagnosis letter & the questionnaires I'd filled out before hand & couldn't understand why the registrar I saw then hadn't given me a diagnosis of Aspergers. He said it was clear to him that I did have Aspergers, was very apologetic for the previous misdiagnosis & said he was happy to change my diagnosis from PDD-NOS to Aspergers. And he was really nice. I'm very happy with that outcome :)

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RiRi

That's awesome! Congrats! :)



It sucks that previously you weren't diagnosed though. :( I know I would have been disappointed if that would have happened to me. But gladly everything's good now. :)

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not around here anymore

That is really good news mysti  :)

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Curlew

That's good news Mysti. 

As Raziel did, I also made a very comprehensive list of traits, tendencies, experiences and example life incidents. I'm talking 20 pages, categorised, with an index. Typed, and printed. 2 copies - one for me, and one for my psychologist who did the diagnostic assessment. I guess that's pretty Aspie, and she said that's not the first time she's seen that :) 
I got my ASD diagnosis on the spot (earlier this week), and now I'm waiting for the report. 

Having notes is definitely a good idea going into a diagnostic assessment. When under pressure and nervous, it can be hard to think on the spot, bring to mind examples, or know where to start. That seems to have to do with central coherence, something people on the spectrum can have trouble with. 

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RiRi

@Curlew I sent my pages after the assessment. Even though I had some stuff typed it up for the appointment, I wasn't confident enough to bring them then. It does sound pretty aspie like to write up things like that and be prepared. :) 

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