Finally

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Joined: 11 Feb 2011
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26 Nov 2011, 10:09 pm

I finally got my report back--about 17 weeks later (I was told it would only be 8) from my diagnostician. I was a little disappointed it didn't give me the scores for the ADIR/ADOS. I wanted to see those. Still I am glad to have the report which officially diagnoses me as having autism once and for all. According to the report, I am more severe than even I realized, but my Mom said she agrees with everything written.

_________________
Diagnosed with classic Autism
AQ score= 48
PDD assessment score= 170 (severe PDD)
EQ=8 SQ=93 (Extreme Systemizer)
Alexithymia Quiz=164/185 (high)

Last edited by littlelily613 on 26 Nov 2011, 10:25 pm, edited 1 time in total.

CockneyRebel
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26 Nov 2011, 10:19 pm

You have the answer now, and that's a good thing.

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BigBadBrad
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26 Nov 2011, 10:33 pm

I was glad to have it when I got mine. I spent a lot of time wondering and second guessing my own thoughts about what I had.

Burnbridge
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27 Nov 2011, 3:02 am

What is ADOS? I heard someone call that "Attention Defecit, Oooh Shiny!" once, but I think that was meant to be humorous.

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27 Nov 2011, 3:30 am

Burnbridge wrote:

What is ADOS? I heard someone call that "Attention Defecit, Oooh Shiny!" once, but I think that was meant to be humorous.

Autism diagnostic observation schedule. It's the gold standard for evaluating and diagnosing PDDs.

ADI-R is autism diagnostic interview - revised.

Littlelily, I'm glad you finally got that report. It's kind of amazing how the notes other people take put stuff into perspective? What I read from my diagnosis made me sound more severe than I ever realized or thought I might be, too.

You reminded me I need to talk to my PCP about getting a more thorough evaluation.

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27 Nov 2011, 3:33 am

Burnbridge wrote:

What is ADOS? I heard someone call that "Attention Defecit, Oooh Shiny!" once, but I think that was meant to be humorous.

ADOS: Autism Diagnostic Observation Schedule - This is a rating system based on observation.

http://portal.wpspublish.com/portal/pag ... ema=PORTAL

ADI-R: Autism Diagnostic Interview, Revised - Structured interview for parents / caregivers.

http://portal.wpspublish.com/portal/pag ... ema=PORTAL

In each a massive scoring system is used to assess possible diagnosis of autism spectrum disorders. Individual scores for each possible traits are given highly subjectively in my humble opinion. Nevertheless, these two combined come the closest to objectively measuring and summarizing severity of symptoms so far.

Burnbridge
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27 Nov 2011, 10:39 am

Oh, I was way off the mark, then I know it sounded funny but it was a serious question, and thanks for the answers.

OJani wrote:

ADI-R: Autism Diagnostic Interview, Revised - Structured interview for parents / caregivers.

^- That makes me suspect that I will never get a Dx. :(

I was a latchkey kid, had so little exposure to my parents that I'd don't think they'd be able to answer anything. My dad was an alchoholic/workaholic, went to work when he woke up, didn't come home till the bar closed, and then he and mom would yell at each other for an hour before he passed out. Mom worked full time (40-50 hrs/week) and went to college for another 30 hours after when I was very young, then after her degree she got a 70 hr/wk job and was heavily sedated on Prozac for 20 years, (for "clinical depression" misDx that was actually a hormone deficiency.) She's just lock herself in her room when she actually was home.

So I don't think they ever got to observe my behavior after the age of 4.

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Asp-Z
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27 Nov 2011, 10:41 am

Congratulations, OP

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27 Nov 2011, 1:15 pm

Yay!

When going through the advantages of diagnosis one of them I mention is getting one of these reports. Mine definitely gave me information I didn't have before that point.

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27 Nov 2011, 1:21 pm

littlelily613 wrote:

...my Mom said she agrees with everything written.

Congratulations! That right there is something on your side that a lot of us don't have. Consider yourself fortunate.

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OJani
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27 Nov 2011, 3:38 pm

Burnbridge wrote:

Oh, I was way off the mark, then I know it sounded funny but it was a serious question, and thanks for the answers.

OJani wrote:

ADI-R: Autism Diagnostic Interview, Revised - Structured interview for parents / caregivers.

^- That makes me suspect that I will never get a Dx.

I was a latchkey kid, had so little exposure to my parents that I'd don't think they'd be able to answer anything. My dad was an alchoholic/workaholic, went to work when he woke up, didn't come home till the bar closed, and then he and mom would yell at each other for an hour before he passed out. Mom worked full time (40-50 hrs/week) and went to college for another 30 hours after when I was very young, then after her degree she got a 70 hr/wk job and was heavily sedated on Prozac for 20 years, (for "clinical depression" misDx that was actually a hormone deficiency.) She's just lock herself in her room when she actually was home.

So I don't think they ever got to observe my behavior after the age of 4.

I wouldn't write them off so quickly (I presume they are still alive). Parents sometimes know more than we can imagine. Besides, many questions are related to age before 4. As far as I know, there are clinics where they diagnose ASD without requiring any information from parents, so if you don't want your parents involved there are still options for getting DXd.

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27 Nov 2011, 3:46 pm

littlelily613 wrote:

I finally got my report back--about 17 weeks later (I was told it would only be 8 ) from my diagnostician. I was a little disappointed it didn't give me the scores for the ADIR/ADOS. I wanted to see those. Still I am glad to have the report which officially diagnoses me as having autism once and for all. According to the report, I am more severe than even I realized, but my Mom said she agrees with everything written.

I'm glad your Mother can confirm your diagnosis, it's really reassuring. Anyway, do you know what holds them back from giving you the full result of your assessment? I'd like to see the full result of my assessment too when we will discuss it on 12/09. Maybe copyright issues?

littlelily613
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27 Nov 2011, 9:37 pm

OJani wrote:

Individual scores for each possible traits are given highly subjectively in my humble opinion.

Couldn't have been too subjective. Everything she put in the report, apparently, describes me to a tee. So she apparently knows what she is doing with her PhD.

_________________
Diagnosed with classic Autism
AQ score= 48
PDD assessment score= 170 (severe PDD)
EQ=8 SQ=93 (Extreme Systemizer)
Alexithymia Quiz=164/185 (high)

littlelily613
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27 Nov 2011, 9:40 pm

Tuttle wrote:

Yay!

When going through the advantages of diagnosis one of them I mention is getting one of these reports. Mine definitely gave me information I didn't have before that point.

That report was DEFINITELY something I really wanted. I had already been diagnosed as on the spectrum prior to that, by a psychologist who would not give me a report. So I went and did it all over again (with more indepth testing) with this other psychologist. It cost a small fortune, but totally worth it in the end to finally have the answers.

_________________
Diagnosed with classic Autism
AQ score= 48
PDD assessment score= 170 (severe PDD)
EQ=8 SQ=93 (Extreme Systemizer)
Alexithymia Quiz=164/185 (high)

littlelily613
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27 Nov 2011, 9:46 pm

Verdandi wrote:

Littlelily, I'm glad you finally got that report. It's kind of amazing how the notes other people take put stuff into perspective? What I read from my diagnosis made me sound more severe than I ever realized or thought I might be, too.

Yes, I agree. Everything she wrote is accurate, and I challenge none of it but a few minor details (for example, she said I did not have any noticeable special interests, after my Dad told her I was VERY obsessed with several things. I think it is because I didn't constantly bring up my special interests as some spectrumites are noted for doing because I barely spoke at all. I just answered questions). She had also included a copy of the tax form she had filled out which consists of details where they ask my capability in a certain area and she has to pick a b or c from very capable to very incapable. Almost all of my check marks were cs, a couple bs, and no as. I really did not notice I was THAT severe. When I mentioned it to my Dad, he said, "you really did not know that?" Apparently he and my mom have thought I was that severe for a long time, they just didn't know before that I have autism.

_________________
Diagnosed with classic Autism
AQ score= 48
PDD assessment score= 170 (severe PDD)
EQ=8 SQ=93 (Extreme Systemizer)
Alexithymia Quiz=164/185 (high)

littlelily613
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27 Nov 2011, 9:48 pm

OJani wrote:

Anyway, do you know what holds them back from giving you the full result of your assessment? I'd like to see the full result of my assessment too when we will discuss it on 12/09. Maybe copyright issues?

I'm not really sure, unfortunately. I have seen posts elsewhere by parents who did have the numbers; however, I've also read before that many psychologists won't disclose them because they are not properly interpreted by the general public. Don't know if this is true, but seems to make sense.

_________________
Diagnosed with classic Autism
AQ score= 48
PDD assessment score= 170 (severe PDD)
EQ=8 SQ=93 (Extreme Systemizer)
Alexithymia Quiz=164/185 (high)

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