Post-assessment thoughts (finally got the result today).

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rebbieh
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10 Sep 2014, 11:56 am

I have Asperger's Syndrome. I'm autistic. I'm trying to get used to the sound of that. It feels so strange and it feels like I'm kidding myself but I'm not. I was diagnosed today after having gone through a very thorough assessment that started back in the end of March. During the session today I asked the psychologist if she is sure of the result (I asked her three times) and she said she is and that it has been confirmed by four of her colleagues as well. She said they thought it was pretty obvious (if you know what to look for anyway).

I have no idea what I'm supposed to feel right now. It's like the result doesn't surprise me but in a paradoxical way it does. Not sure that makes sense. Suspecting (but doubting and denying) that you have something and now knowing that you have something isn't the same thing. I guess a lot of you know what I mean.

We're not done with going through the results. We have another two sessions for that (one in three weeks and one another two weeks after that). I wish we could go through it all next week or something but yeah, the psychologist wanted some time between the sessions. Time to let me think and process the whole thing. Anyway, today we "only" went through the diagnostic criteria and the psychologist told me which ones I meet and why she thinks that. She also told me that she's been using DSM-IV, since that's still in use here, but that I also meet the criteria in DSM-V so the official name of my diagnosis will change over the years. Next time we'll be going through the WAIS results and things like that (I worry about that).

There's a lot more I'd like to say but I'm not sure how to express it right now. I might write more later. Anyway, I'm now officially diagnosed and I just wanted to let you know about it. Also, thank you so much for supporting me over the years. It has been a long, difficult and exhausting process and I'm really thankful for everything you've helped me with. Thank you for all the advice, all the encouragement, for reading my rants and listening to my anxious thoughts. I hope you'll keep supporting me. It really means a lot.



Last edited by rebbieh on 10 Sep 2014, 1:34 pm, edited 1 time in total.

skibum
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10 Sep 2014, 1:29 pm

Congratulations Rebbieh. At least now you know for sure. That is the most important thing. Definitely keep writing what you feel and all the emotions you experience. That will help a lot. It will also help others who have yet to go through the process. Keep us posted on what they tell you if you like. I am very curious as to how they explain the diagnosis to you.

I am glad you feel love and support here. I know that we will continue to be here for you as you process all of this.


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Adamantium
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10 Sep 2014, 1:47 pm

Congratulations.

It IS a strange thing, knowing and having those suspicions confirmed.

And the sun rises and sets, just as it did before.
You have been anxious about this for a long time, so you may have an odd feeling letting all that energy go.

I wish you the best.



BirdInFlight
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10 Sep 2014, 2:12 pm

Congratulations on finally knowing for sure, and I'm in awe of the bravery of those who go ahead with what sounds like a very involved process. I can only imagine the incredibly complicated feelings you must have right now; you must have very mixed emotions. I can see how it must be an enormous relief to have your own suspicions validated at last, but it's also so final -- "Yes, this is me and no doubt anymore, no turning back." That's pretty huge! And brave to deal with.

I just heard back from someone who can give me a pre-diagnostic assessment, kind of a way to see if if it's even worthwhile pursuing formal diagnosis. She is ready to assess me next week and I'm strangely freaked out.

.



skibum
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10 Sep 2014, 2:44 pm

BirdinFlight best wishes with your assessment and please let us know how it goes.


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rebbieh
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10 Sep 2014, 3:00 pm

Thank you, everyone. It feels really weird. I feel really weird right now. I don't know why but it somehow feels like the session earlier today was just a dream and I've actually asked myself if it was real several times the past few hours.

Skibum, I'll probably keep writing here. Updates and thoughts and such. There's a lot going on in my head right now and I don't really have anyone to talk to about this "in real life" (not the way I want to anyway). I just hope I'm not a burden if I keep writing.

Adamantium, how long does it take to accept the diagnosis? I know there's no specific answer to that but how long did it take for you?

BirdInFlight, thank you and good luck with your assessment! Let me/us know how it goes.



sharkattack
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10 Sep 2014, 3:06 pm

I got mine in March last year.

Your the same person you always were.

You understand yourself more now and it's official.

It took me about a year to filly accept it without having doubts.



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10 Sep 2014, 4:04 pm

I don't think there is any one moment when you cross a line to it, so it's hard to put a time. But a year, 18 months--something in there.

It's a gradual realignment of thoughts. You have these little realizations, moments when you see: this is that thing. And also, you sometimes see that the way it seems that things are somehow different for you are not in your head--they really are different for you.

Sometimes that's liberating. Sometimes it's a bit alienating. You can suddenly realize you don't just FEEL like a stranger in a strange land. You ARE.

But also you can embrace the things that bring you joy and let yourself be you and that is a sweet and lovely thing.

Enjoy the good moments and don't let the alienating ones get you down.



skibum
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10 Sep 2014, 4:36 pm

I look forward to reading what you write. Don't worry about being a burden. That won't happen. If people want to read about your experience they will and if they don't want to they just won't look at the thread. :) I will read it though.


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BirdInFlight
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10 Sep 2014, 4:46 pm

rebbieh and skibum, thanks for your best wishes, and yes, I will let you know how it goes! I'm a queasy mix of glad but scared! I promise I will come back to tell you the decision even if I'm told "It's not ASD, you're just a freak, have a nice life wondering why!" LOL!

And rebbieh, please keep on posting your thoughts -- it is so interesting and helpful to read of someone's journey through all this, and as you process the news you've just received, it will be great to read how your feelings about it change and grow.

.



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10 Sep 2014, 5:43 pm

congratulations rebbieh,welcome to the club. :P


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10 Sep 2014, 10:29 pm

Congratulations Rebbieh, welcome home :D I went through the same mix of surprise and and disbelief, coupled with feeling validated that I was right all along; it goes away after a few weeks I've found. I'm very interested to hear more about your diagnostic experience (psychological testing is rather a special interest of mine). What was your assessment like?

Good luck in your pre-assessment assessment BirdinFlight :) I look forward to hearing how it goes!


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rebbieh
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10 Sep 2014, 11:34 pm

Again: thank you, everyone.

I just woke up. I don't really feel different today than before I got diagnosed yesterday (which was to be expected), except for the huge amount of thoughts and questions in my head (I always experience that but now they're a bit different). Right now I'm thinking about who to tell about my autism ("my autism", so strange). I've already told my boyfriend, my parents and my siblings. They have the right to know. I've been thinking about how it would be so much easier for me at university if my classmates knew about the autism because then I wouldn't have to feel like a complete idiot for not being able to do certain things (social things and certain things at university). It would be weird though and in reality I don't think I'll tell them. I mean, I haven't even talked to all of them (and we're a small class).

I don't know if you're interested but here are the diagnostic criteria for Asperger's Syndrome. I thought I'd show you which ones I apparently meet (felt very correct when the psychologist explained the criteria and why she thinks I meet them). The bold ones are the ones I fully meet. The one in italics is one that don't fully meet but you can still see a pattern/trend in the way I choose my relationships with other people. Basically, I tend to be interested in forming some sort of relationship with people who are older than I am (it's been like that since childhood) and I'm very often drawn to knowledge (people who are smart and/or can teach me something etc) instead of whatever other people are drawn to. However, it's not impossible for me to develop relationships with people my age. I just don't really like it.

"(I) Quantitative impairment in social interaction, as manifested by at least two of the following:

(A) marked impairments in the use of multiple nonverbal behaviours such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(B) failure to develop peer relationships appropriate to developmental levels
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people (e.g. by lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity

(II) Restricted repetitive & sterotyped patterns of behaviour, interests and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning

(IV) There is no clinically significant general delay in language (e.g. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behaviour (other than in social interaction) and curiosity about the environment in childhood

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia


I do have some repetitive motor mannerisms that I use to calm myself but one of those the psychologist didn't notice (mostly because it's something I do with my feet) and the others she said were tactile things. It's difficult to explain what she meant. Anyway, I often fidget with things (not only when stressed and anxious but especially when stressed and anxious) and I often do it repeatedly but perhaps not to the same extent as people who meet that specific criterion (I don't know).

Just wanted to share this with someone. Hope that's ok.

StarTrekker wrote:
What was your assessment like?


Could you please be more specific? I'll try to answer your questions.



Last edited by rebbieh on 10 Sep 2014, 11:53 pm, edited 1 time in total.

Spectacles
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10 Sep 2014, 11:48 pm

Congrats!! This is really neat to read :). Kinda feels like preparation. Really glad for you! I hope it settles in well (I'm currently on the waiting list to start with mine)



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11 Sep 2014, 1:12 am

rebbieh wrote:

StarTrekker wrote:
What was your assessment like?


Could you please be more specific? I'll try to answer your questions.


Basically, what sorts of tests did you take, what happened during the interview, how did the discussion about your diagnosis go, etc. Don't know if any of these qualify as too personal, don't mean to pry, just curious :)


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rebbieh
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11 Sep 2014, 4:57 am

StarTrekker wrote:
Basically, what sorts of tests did you take, what happened during the interview, how did the discussion about your diagnosis go, etc. Don't know if any of these qualify as too personal, don't mean to pry, just curious :)


Well, I know I took WAIS, ADOS and a memory test (I, ironically, don't remember what it was called). I also got to do two tests on the computer. I think they were testing impulsivity plus my ability to focus (I was also assessed for ADHD but it turns out I don't have it). So yeah, quite a lot of different tests seeing as WAIS consists of multiple tests. Not sure if you want a more detailed answer.

We had quite a few sessions where we just talked about things. I had to fill out some questionnaires but since I have a hard time filling those out (I get stuck on details and specific words and want to know how they're defined etc) the psychologist changed tactics and asked me questions in interview form and filled out the questionnaires for me, based on the answers I gave her. We also talked a lot about what my life's like, if I have friends and what it's like socialising with them, how I feel about different things, how I perceive the world and emotions, what I'm interested in, how things are working for me at university etc. We talked about so many things it's difficult remembering all of it.

Besides talking to me the psychologist also talked to my parents (for two hours) and my boyfriend (for 30 minutes or so). She talked to my parents about my childhood and she talked to my boyfriend about his impressions of me and my habits etc.

All of this (summer vacation included) took about six months. Anyway, you asked how the discussion about my diagnosis went. What do you mean? The discussion we had yesterday when she told me about the diagnosis?

It feels like this is a very summarised answer but I don't know how detailed you want me to be and if you want details I'm afraid I'm going to need even more specific questions. I think broad questions are difficult to deal with.

Spectacles wrote:
Congrats!! This is really neat to read :). Kinda feels like preparation. Really glad for you! I hope it settles in well (I'm currently on the waiting list to start with mine)


Thank you. Good to hear you find this thread useful. Do you know when you're getting assessed?