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han_24
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29 Jul 2017, 3:25 pm

Hey everyone (I'm new here!)

So I'm in the last stage of getting diagnosed. I've done the testing and now I'm waiting two more weeks to go back and get my results. It's driving me crazy with overthinking and reliving it!!

I'm 27 years old female and I spent my life selectively mute and masking my personality, which makes me worried that the doctor will not be able to properly "read" me. I'm skeptic that in just 3 visits someone can understand me enough to properly diagnose me... people that have know me for years still don't understand me! I'm also worried that I did too well on the tests and will appear too clever or too smart. For example, I'm an artist/animator so I was able to come up with a simple problem/resolution story rather easily during the story test. The tests didn't seem hard- were they suppose to be hard? I know that the tests are not merely about my answers, but also about my behavior, but what if I sat there completely stiff with hands out of sight? I'm just concerned that I didn't appear "autistic enough". Whatever that means. Gah!

Did anyone else have these concerns??

If anyone can give me a bit of reassurance, that would be nice. I feel like for the first time in my life I'm discovering something really important about myself, but I'm afraid that it will get stolen from me if I don't get an ASD diagnosis. I've done so much soul searching over my life trying to figure myself out and how to belong and it will be a HUGE disappointment if I yet again am "rejected". Thanks in advance. <3



dd1
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29 Jul 2017, 3:40 pm

Yes when I was getting diagnosed I was feeling very self conscious, but that's normal autistic behaviour I'm guessing - feeling all the time like you have to control your behaviour and how you come across cause it doesn't naturally explain itself? During my assessment I wasn't acting autistic at all and I actually exposed everything about me that was not so autistic (in my opinion) cause I was feeling so nervous about somehow manipulating the results, given I had been researching autism su much. At the end they told me I met the criteria for ASD and my cognitive skills were poor in areas I had no idea about, so let them do their job. When you read the report, if you feel it's inaccurate and that it doesn't represent you, you can always get assessed again in the future or seek a diagnosis for something else that could explain how you feel or behave :D



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29 Jul 2017, 3:42 pm

Welcome to Wrong Planet! :D


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han_24
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29 Jul 2017, 4:02 pm

dd1 wrote:
Yes when I was getting diagnosed I was feeling very self conscious, but that's normal autistic behaviour I'm guessing - feeling all the time like you have to control your behaviour and how you come across cause it doesn't naturally explain itself? During my assessment I wasn't acting autistic at all and I actually exposed everything about me that was not so autistic (in my opinion) cause I was feeling so nervous about somehow manipulating the results, given I had been researching autism su much. At the end they told me I met the criteria for ASD and my cognitive skills were poor in areas I had no idea about, so let them do their job. When you read the report, if you feel it's inaccurate and that it doesn't represent you, you can always get assessed again in the future or seek a diagnosis for something else that could explain how you feel or behave :D


Thanks for the speedy reply. Is it typical for doctors to give results right after the tests? My doctor only told me she saw some "autism red flags", but wanted to look over all the results more thoroughly because she wasn't sure what her final assessment would be... so even though that sounds reassuring it could also mean that she is in doubt about her finding too.

Is testing for Autism and Aspergers the same tests? I took the ADOS (and other tests) and I'm wondering if they were to see if I had autism (black and white yes or no result) or if the tests were more of a measure of a whole spectrum. I have no clue! Thanks, guys!



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29 Jul 2017, 4:50 pm

Welcome to WP! :D


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komamanga
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30 Jul 2017, 8:26 am

Rooting for you!



AspieUtah
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30 Jul 2017, 9:18 am

han_24 wrote:
...Is it typical for doctors to give results right after the tests? My doctor only told me she saw some "autism red flags", but wanted to look over all the results more thoroughly because she wasn't sure what her final assessment would be... so even though that sounds reassuring it could also mean that she is in doubt about her finding too.

Is testing for Autism and Aspergers the same tests? I took the ADOS (and other tests) and I'm wondering if they were to see if I had autism (black and white yes or no result) or if the tests were more of a measure of a whole spectrum. I have no clue! Thanks, guys!

The ADOS series of tests is used to determine whether an individual could be diagnosed with autism or Autism Spectrum Disorder (ASD) depending on the total test scores (having a total score which supports a diagnosis of ASD would include Asperger Syndrome). It is typical for diagnosticians who use the ADOS tests to describe their initial conclusion immediately after the tests are completed, but they can say that they will know more at a later date. My diagnosticians said something similar to what your diagnostician told you when they said that they would need to review my results to determine whether one of my behaviors was because of my autism or one of my comorbid diagnoses (it turned out to be related to autism). I suspect that your diagnosticians are just spending some time considering something similar in your results. I wouldn't worry if I were you.


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


han_24
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30 Jul 2017, 11:00 am

Thanks for the kind words, Stampy and Komamanga

AspieUtah, thanks for sharing your experience. I am concerned that the doctor might tell me I just have social anxiety (because I have/had selective mutism) and disregard autism because I did well on the tests and didn't show any stims. I don't feel socially anxious though. In fact, when I self diagnosed myself when I discovered selective mutism about 5 years ago, I thought all I had to do to overcome it was put myself into social situations and start talking more. So I did try doing more social things, but I still don't connect to people. It's not that I'm anxious in social situations, I'm just clueless and awkward. It makes me exhausted and feel fake. I'd rather just stay home and do my interests! I've never minded being alone. I don't get anxious when public speaking or even singing in front of people. I'll talk when asked a questions. Maybe I was wrong to even say I have selective mutism? I've never met anyone as socially mute as me, so I have no idea what it is!
Thanks for reading.



AspieUtah
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30 Jul 2017, 11:13 am

han_24 wrote:
...AspieUtah, thanks for sharing your experience. I am concerned that the doctor might tell me I just have social anxiety (because I have/had selective mutism) and disregard autism because I did well on the tests and didn't show any stims. I don't feel socially anxious though. In fact, when I self diagnosed myself when I discovered selective mutism about 5 years ago, I thought all I had to do to overcome it was put myself into social situations and start talking more. So I did try doing more social things, but I still don't connect to people. It's not that I'm anxious in social situations, I'm just clueless and awkward. It makes me exhausted and feel fake. I'd rather just stay home and do my interests! I've never minded being alone. I don't get anxious when public speaking or even singing in front of people. I'll talk when asked a questions. Maybe I was wrong to even say I have selective mutism? I've never met anyone as socially mute as me, so I have no idea what it is!
Thanks for reading.

I was selectively mute until I was 16 years of age; I would stare at the floor in front of me, and whisper one-word answers to others' questions. Anything involving more than one word caused me to nod, shake my head or shrug my shoulders in indifference. An employer of mine single-handedly taught me to speak to others socially. Mutism can be a subclinical behavior or characteristic, so it is common among autists. In most circumstances, my mutism is still there, but manageable. Even though it is still difficult, I have been lucky enough to help legislators I know write better laws in my community. Now, people can't shut me up. :lol: But, my masking often makes me exhausted, too.


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


han_24
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30 Jul 2017, 3:55 pm

Sounds so so much like me. I'm either super quiet or super loud. Few people see my loud side. But when they do, I'm crazy (clapping, dancing, squealing, singing) all of it. But the doctor didn't get to see any of that.



AspieUtah
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30 Jul 2017, 4:25 pm

han_24 wrote:
...the doctor didn't get to see any of that.

While I was quite calm during my assessment, I was stimming nonetheless. My diagnosticians didn't recognize it, though, and said that they saw no such stimming. After the assessment, I pointed out that my primary stim is swiping the table top or desktop in front of me (as one would remove dust), or my pant legs if I amn't seated. I have even resorted to rubbing my palms together. The cool, smooth temperature of these surfaces is calming to me. I realize that there isn't any dust, but it works for me.


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


han_24
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30 Jul 2017, 5:27 pm

Luckily I gave her a print out explaining more about my history that I didn't mention during the first interview. I hope that will help. I told her about how I do a lot of verbal and vocal stims when I'm comfortable.

I also mentioned that I was never bullied, but I was ignored pretty severely. Other kids got bullied for being different and I was afraid that I'd get bullied too (for being so quirky) so I withdrew and hid my personality/emotions. I'm concerned now that the doctor will interpret this as mere social anxiety or Adult Post bullying syndrome (even though I wasn't bullied directly). I mentioned it on the print out as an example of how I was socially confused (specifically on the concept of bullying), but I hope I didn't make it sound like I was merely afraid of being bullied. I still don't know why some kids are bullied and others aren't. It's so unfair. My head has been spinning with all the ways my words could have been misinterpreted.



han_24
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10 Aug 2017, 11:22 am

Hi guys,
I just wanted to come back to this discussion and say that I was diagnosed with ASD. I'd be an Aspie if that were still a correct term. This is quite a relief to finally be done with the testing and waiting. I'll go into more detail later with a new post.
Thanks for the comments so far!



AspieUtah
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10 Aug 2017, 11:58 am

I hope your diagnosis is what you hoped for. :wink:


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)