Just got my official report in the mail

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jenisautistic
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17 Dec 2014, 10:10 pm

skibum wrote:
I just got my official diagnosis report in the mail yesterday. It's a pretty overwhelming experience to read about myself in this report. They gave me a total of 13 diagnostic tests and the results of each were explained in detail. It was fascinating to see how I did. I had no idea about some of the things they said. They also gave me about ten copies of a letter that I can use if I need a letter for a situation explaining that I would need special accommodations in a situation like school or a job. So this was great. I still need to get with them to talk about the report. There were a couple of errors, basically very minor typos and one thing which I need explained. They put me down as a level three severity where I am pretty sure they should have meant level 1. I imagine it was a transcription error that will be corrected as soon as I point it out to them.

But I am so glad to have this document in my hands now. It is powerful and surreal and overwhelming all at the same time.

I also have a new understanding of opinions towards the self diagnosed. I was never self diagnosed, just unofficially diagnosed because my Autism was originally pointed out to me by a friend who is an expert in the field. It was just done in an unofficial non clinical capacity. Once he told me, I did 18 months of intense research and learned about ASDs and Misophonia, both of which I have but had known nothing about. I only knew that I suffered but never knew why or that my suffering had names and could be diagnosed. It was during that 18 months of research that I discovered and joined WP. Then on October 14 I was able to get tested, I got a verbal diagnosis three weeks later and then got the report in the mail yesterday.

But as I read the report and saw how detailed it was and how much was tested, it occurred to me that in my own knowledge of myself there are things that were impossible for me to know or understand that could only be understood through these tests and through expert observation.

But here is what I do believe about the self diagnosed. I believe that you can know yourself well enough and do enough research and educate yourself so that you can know pretty accurately for the most part if you are on the Spectrum or not. I know that that is not 100% and there are some people who will get it wrong but I think that if you are severe enough in how you suffer, you can pretty much identify the symptoms in yourself well enough to at least know that you are most likely on the Spectrum. But after reading this report, I know that it is impossible for us to have enough self knowledge to be able to look at each individual aspect of what is tested and to have an accurate picture of that. What I found for myself is that I am actually more severely affected in Autistic ways than I had realized. There were things that they found in the tests that I had no idea I even struggled with and now that I see it in writing, more things are making sense to me about why I have had certain struggles.

So as far as the self diagnosed are concerned, if someone can't afford to get a diagnosis or does not feel that it will benefit him or her to get one, I will continue to completely respect that person's decision like I always have. Like I have always also said, I think it is very important to say whether you are self diagnosed if that is what you are. I have always said that I was unofficially diagnosed until now, and I think that that honesty is very important. Now, I just say, "I am Autistic or I have HFA/Asperger's." But I also think that if one can afford a diagnosis and has no reason not to get one, than that person should get one. But I have nothing whatsoever against anyone who for whatever reason is unable to get one or chooses not to get one. To me the important thing is that you are honest when speaking about your situation if you are self diagnosed or even unofficially diagnosed like I was, that you are willing to say that and be honest about it when the situation calls for it.

Could you describe the tests you took?


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Norny
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17 Dec 2014, 10:25 pm

It must be a relief to have finally got those papers.

How much did the whole procedure cost you?

Seems like your assessors were extremely competent.


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17 Dec 2014, 10:28 pm

BirdInFlight wrote:
You have turned into such a self righteous jerk now, skibum, and fck your "respect" -- you're full of it since you got your diagnosis.


I think she might be feeling happy, at receiving her report----lighter, confident----like the WORLD has been lifted from her shoulders. I see no difference in her OP, than any of her other posts. She's always been, IMO, very thoughtful, caring, considerate, upbeat, helpful, and respectful in her posts. When someone questioned what she was saying, or misunderstood, she responded to them, in a very mature, articulate, calm way. I always love reading her posts, and miss them, when she's not around.



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17 Dec 2014, 10:32 pm

kraftiekortie wrote:
From which telescope? I would guess the Mt Palomar telescope?

Hubble!



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17 Dec 2014, 10:44 pm

But of course....



Graelwyn
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17 Dec 2014, 11:08 pm

My diagnosis involved simply filling out a few questionnaires, a long psychiatric history and a rather brief clinical interview with specific questions asked pertaining to my childhood and adulthood issues. I must admit, I have since been questioning how valid the diagnosis is, and am rather tempted to try and get referred to another team I found locally based with the university who do the full assessment that takes up to 5 hours for one part of it... however, I would be hard pushed to coax a parent to act as the evidence of my developmental history as neither have much patience with the diagnosis.

The main plus, I suppose, is that the guy who diagnosed me, has spoken at conferences on Autism. :|


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18 Dec 2014, 4:42 am

Congratulations Skibum and Opi. Welcome back Opi.

On WP we discuss one aspect of Autism at a time. In the diagnostic report it is all their laid out in one place. I found it very humbling.


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18 Dec 2014, 10:04 am

I am happy for you that you finally have the diagnosis and paperwork in hand. I remember my mixed feelings but overall, I was very happy that I finally got an official opinion.


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18 Dec 2014, 11:16 am

Graelwyn wrote:
My diagnosis involved simply filling out a few questionnaires, a long psychiatric history and a rather brief clinical interview with specific questions asked pertaining to my childhood and adulthood issues. I must admit, I have since been questioning how valid the diagnosis is, and am rather tempted to try and get referred to another team I found locally based with the university who do the full assessment that takes up to 5 hours for one part of it... however, I would be hard pushed to coax a parent to act as the evidence of my developmental history as neither have much patience with the diagnosis.

The main plus, I suppose, is that the guy who diagnosed me, has spoken at conferences on Autism. :|


This sounds a lot like my diagnosis: we had records of tests done when I was in middle school (interesting to read there my report that I had once had three friends, several years earlier and that the CST considered my interest in astronomy "extreme") we had some questionaires and some records from my employment in addition to talking with me for a couple of hours, including a 30 minute conversation with my wife.

After the process was complete he told me that many of the things that I thought were small talk or general background conversation (a discussion of the art in his office, or the way he showed me into the room and allowed me to pick a place to sit, for example) was part of the assessment.

I was very impressed with his experience, insight and intelligence. I don't doubt the validity of his assessment. I think the observational and analytical skill and experience of a man like this is more valuable in an assessment than a lot of testing (e.g., IQ subscales) which cannot be shown to be diagnostic of autism.

It seems unfortunate that reports about a different assessment process with a lot of secondary tests and information should undermine your confidence in the validity of your own assessment. I think you are giving too much weight to these tests.

There is a lot of test information on my son, but the diagnostician told me she made the diagnosis within the first 10 minutes and then supplemented that observational assessment with information from the extensive testing. She had a colleague assess him as well, for an on-the-spot second opinion. These two specialists have an extremely busy practice and are very experienced. I trust them when they say they can usually see the relevant signs quite quickly. I think you should too.



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18 Dec 2014, 1:42 pm

Graelwyn wrote:
My diagnosis involved simply filling out a few questionnaires, a long psychiatric history and a rather brief clinical interview with specific questions asked pertaining to my childhood and adulthood issues. I must admit, I have since been questioning how valid the diagnosis is, and am rather tempted to try and get referred to another team I found locally based with the university who do the full assessment that takes up to 5 hours for one part of it... however, I would be hard pushed to coax a parent to act as the evidence of my developmental history as neither have much patience with the diagnosis.

The main plus, I suppose, is that the guy who diagnosed me, has spoken at conferences on Autism. :|


Don't worry about it.

Most of Skibum's 13 tests will likely have been irrelevant overkill. I looked up the GARS test yesterday and it's aimed at 3-22 year olds, not adults. People just like to think quantity=quality, so that's what they provide.



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18 Dec 2014, 1:51 pm

I disagree about the overkill. Often to make an accurate diagnosis many other possible conditions must be ruled in or out. Although using a testing instrument outside the population for which it's been validated weakens its accuracy that doesn't make it useless either. Sometimes the best tool for a job isn't perfect for it either.


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18 Dec 2014, 1:57 pm

Sorry, but I can't see how anyone could possibly need 13 tests.

The psych will need to take the possibility of other conditions into account, but ultimately you're being tested for autism, not for ADHD, depression, anxiety, etc. Most adults who go for an autism assessment will already have at least one co-morbid diagnosis, so there is no need to test for them all over again.

Ditto IQ tests. If it's clear that you don't have any learning disabilities and your IQ is >70, there's no need for an IQ test either.



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18 Dec 2014, 2:10 pm

Opi wrote:
I disagree about the overkill. Often to make an accurate diagnosis many other possible conditions must be ruled in or out.


I wonder how often this is a problem? I would trust the psychiatrist who assessed me to require additional testing if there were any indication that it was needed. He asked some questions that were enough for him to discount some alternative explanations for the symptoms and also discussed the Panic Disorder and Depression diagnoses.

It seems likely that given normal variations of symptoms and overlap of symptoms between conditions differential diagnosis would be harder in some cases than others--but I think the professionals can adjust for that.



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18 Dec 2014, 4:24 pm

Yay! I'm so happy for you Skibum :mrgreen: I felt the same way you did when I finally got my report; like I couldn't believe it had actually happened, after so long waiting. Happy skiing! :heart:


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18 Dec 2014, 4:28 pm

Campin_Cat wrote:
BirdInFlight wrote:
You have turned into such a self righteous jerk now, skibum, and fck your "respect" -- you're full of it since you got your diagnosis.


I think she might be feeling happy, at receiving her report----lighter, confident----like the WORLD has been lifted from her shoulders. I see no difference in her OP, than any of her other posts. She's always been, IMO, very thoughtful, caring, considerate, upbeat, helpful, and respectful in her posts. When someone questioned what she was saying, or misunderstood, she responded to them, in a very mature, articulate, calm way. I always love reading her posts, and miss them, when she's not around.


All of this. It's not very nice to rain on somebody's parade like that BirdInFlight; I'll bet you wouldn't have liked it if you'd made a thread to talk about your new diagnosis and somebody stomped on you for it.


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18 Dec 2014, 5:39 pm

Yes. words can fly high, when relief and cascades of AHA´s hit you. It´s natural. Nothing wrong with that.


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