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BreathlessJade
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09 May 2023, 4:17 pm

After living with myself for over 40 years, do major research, and getting specific comments from drs, i took an evaluation from a university. they concluded from their research that i not only showed signs of what they were looking for but not even on the spectrum. I provided research, lists, very personal experiences. they said "anxiety" and i almost lost it. it's a slap in the face. and i am very open to getting the truth, i live authentically as possible, but I could not agree more with these results. i'm currently seeking an adhd evaluation as well. now i see what people go through. they were very nice, but no, i am on that spectrum if only on the far edges and no amount of invalidation will tell me otherwise.



purplepuffin
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09 May 2023, 6:38 pm

What tests did they do? If they only did an interview (and not a structured, researched and validated one like the ADI-R) then you can probably dismiss it. Get an evaluation somewhere where they run research supported tests.



BreathlessJade
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09 May 2023, 7:33 pm

it was 3 hours long, including having me describe a story book with no letters. a few pictures of scenerios (looked like something for children) and asking me a few general questions. they said they followed the dm-5. they were very polite but it didn't feel solid. it felt incomplete (like there was so much of my life they could have asked about.) and i am going to dismiss it and perhaps just remain self-diagnosed because that was such a devastating call about MY life. It's not like i'd really qualify for much services, i just love the community and wanted just an ounce of validation. i will always be open to a truth...but this? I can accept their answer. I won't let myself. and so many get this same thing, it's horrible.



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09 May 2023, 7:42 pm

BreathlessJade wrote:
i just love the community and wanted just an ounce of validation.


FYI, you don't need a diagnosis to post here. If you self diagnose as ASD that's also OK here. I know you want validation but just letting you know it's not needed here.


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BreathlessJade
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09 May 2023, 7:46 pm

thank you!!



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09 May 2023, 7:48 pm

BreathlessJade wrote:
thank you!!


No worries, you will get treated badly regardless of your diagnosis status :lol: (joke)


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BreathlessJade
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09 May 2023, 7:50 pm

i'm surprisingly comforted by that :lol:



bee33
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09 May 2023, 8:24 pm

I had a similar experience. I already knew I didn't fit every single criteria, but the specialist said I didn't qualify because I don't fit every single criteria. Well, I could have told her that! Autism is a spectrum and it includes a lot of different aspects and not everyone will fit into it neatly. I thought that was obvious, but not to the person who did my assessment, I guess.



IsabellaLinton
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09 May 2023, 8:34 pm

Awww, I'm sorry to hear that. It must be extremely frustrating but at the same time I like your attitude of looking for the next possible explanation with an ADHD assessment. I did my ADHD two years after ASD at a different place, and a lot of the tests were going to be the same as ASD so they just used the data from my ASD report. Regardless it was still a cross-screening with the tests that they did do, and they were able to confirm both. I wonder if your ADHD will screen for ASD as well? They need to list comorbids and differential diagnoses (things they've ruled out which might be mistaken for ADHD).

You are always welcome here no matter what happens.


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purplepuffin
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09 May 2023, 8:57 pm

BreathlessJade wrote:
it was 3 hours long, including having me describe a story book with no letters. a few pictures of scenerios (looked like something for children) and asking me a few general questions. they said they followed the dm-5. they were very polite but it didn't feel solid. it felt incomplete (like there was so much of my life they could have asked about.) and i am going to dismiss it and perhaps just remain self-diagnosed because that was such a devastating call about MY life. It's not like i'd really qualify for much services, i just love the community and wanted just an ounce of validation. i will always be open to a truth...but this? I can accept their answer. I won't let myself. and so many get this same thing, it's horrible.


Sounds like that was the ADOS-2, which is a research supported test. The activities you do are designed to elicit behaviours that they can count and measure. There are a lot. Things like use of gestures, conversation ability, noticing and describing feelings, imagination ability, things like that. It is important that they do tests like this, because a lot of common childhood experiences that result from being autistic can also result from other conditions. A general conversation about your life won't give answers that can be relied upon (even though there was lots you would have liked to tell them).

Did you find out what you scored in each area? You could ask for a feedback session and ask them why they scored you in the way they did and why they think that means you don't have ASD. And they can explain why they think your symptoms are more congruent with anxiety. You can come away from that EITHER: feeling more confident in their assessment and thinking about how you are going to go forward with treating your anxiety, OR: having a better idea of why you might have behaved a certain way in the test, if it isn't how you would normally. You may have been masking heavily, trying very hard to be as friendly and polite as possible even though it felt very wrong and unnatural and being very fake. They may not have been able to spot this if you are skilled at masking.

There are some pluses and minuses either way. If you decide they were right, then anxiety is treatable. In the future you may have no trouble socialising and will be able to pick up social skills that you might have lacked in your younger years very easily without specific training, once you are able to get out there and try (once the anxiety starts to be treated). So it's a very bright outlook. The minuses are you may feel even more aggrieved that it wasn't picked up earlier and treated, so you could have had a nicer earlier life, and some of your life may feel wasted. Or might also feel wasted in that you've spent some time thinking it was something it wasn't, and there can be some grief letting go of that.

If you think they are wrong, the benefit is that the identity you have started building stays intact. The problem then is finding another psychologist to assess you who can spot autism in high masking individuals (you don't want the same thing to happen in a second assessment). This may involve a lot of research and talking to potential psychologists which is tricky itself.

There is a middle ground too - you might be in the Broader Autistic Phenotype, meaning you have autistic traits but they aren't quite pronounced enough to get a diagnosis.

Whichever way it goes, you'll always be welcome in the group



BreathlessJade
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09 May 2023, 11:07 pm

bee33 wrote:
I had a similar experience. I already knew I didn't fit every single criteria, but the specialist said I didn't qualify because I don't fit every single criteria. Well, I could have told her that! Autism is a spectrum and it includes a lot of different aspects and not everyone will fit into it neatly. I thought that was obvious, but not to the person who did my assessment, I guess.


man who are these people that are so uninformed



BreathlessJade
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09 May 2023, 11:09 pm

IsabellaLinton wrote:
Awww, I'm sorry to hear that. It must be extremely frustrating but at the same time I like your attitude of looking for the next possible explanation with an ADHD assessment. I did my ADHD two years after ASD at a different place, and a lot of the tests were going to be the same as ASD so they just used the data from my ASD report. Regardless it was still a cross-screening with the tests that they did do, and they were able to confirm both. I wonder if your ADHD will screen for ASD as well? They need to list comorbids and differential diagnoses (things they've ruled out which might be mistaken for ADHD).

You are always welcome here no matter what happens.

great info! coming from all you guys, it's more validating than this test



BreathlessJade
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09 May 2023, 11:19 pm

purplepuffin wrote:
BreathlessJade wrote:
it was 3 hours long, including having me describe a story book with no letters. a few pictures of scenerios (looked like something for children) and asking me a few general questions. they said they followed the dm-5. they were very polite but it didn't feel solid. it felt incomplete (like there was so much of my life they could have asked about.) and i am going to dismiss it and perhaps just remain self-diagnosed because that was such a devastating call about MY life. It's not like i'd really qualify for much services, i just love the community and wanted just an ounce of validation. i will always be open to a truth...but this? I can accept their answer. I won't let myself. and so many get this same thing, it's horrible.


Sounds like that was the ADOS-2, which is a research supported test. The activities you do are designed to elicit behaviours that they can count and measure. There are a lot. Things like use of gestures, conversation ability, noticing and describing feelings, imagination ability, things like that. It is important that they do tests like this, because a lot of common childhood experiences that result from being autistic can also result from other conditions. A general conversation about your life won't give answers that can be relied upon (even though there was lots you would have liked to tell them).

Did you find out what you scored in each area? You could ask for a feedback session and ask them why they scored you in the way they did and why they think that means you don't have ASD. And they can explain why they think your symptoms are more congruent with anxiety. You can come away from that EITHER: feeling more confident in their assessment and thinking about how you are going to go forward with treating your anxiety, OR: having a better idea of why you might have behaved a certain way in the test, if it isn't how you would normally. You may have been masking heavily, trying very hard to be as friendly and polite as possible even though it felt very wrong and unnatural and being very fake. They may not have been able to spot this if you are skilled at masking.

There are some pluses and minuses either way. If you decide they were right, then anxiety is treatable. In the future you may have no trouble socialising and will be able to pick up social skills that you might have lacked in your younger years very easily without specific training, once you are able to get out there and try (once the anxiety starts to be treated). So it's a very bright outlook. The minuses are you may feel even more aggrieved that it wasn't picked up earlier and treated, so you could have had a nicer earlier life, and some of your life may feel wasted. Or might also feel wasted in that you've spent some time thinking it was something it wasn't, and there can be some grief letting go of that.

If you think they are wrong, the benefit is that the identity you have started building stays intact. The problem then is finding another psychologist to assess you who can spot autism in high masking individuals (you don't want the same thing to happen in a second assessment). This may involve a lot of research and talking to potential psychologists which is tricky itself.

There is a middle ground too - you might be in the Broader Autistic Phenotype, meaning you have autistic traits but they aren't quite pronounced enough to get a diagnosis.

Whichever way it goes, you'll always be welcome in the group


you gave me some excellent advice. for now I will gladly wear Broader Autistic Phenotype. and yes i was masking and trying not to be worried about being authentic. They commented on my anxious behaviors too! I was a mess. I've been in therapy for like 15 years for anxiety and the only time i felt relief was when I discovered neurodiversity. I consider myself like and x-men Mystique: heavy making to fit in but eventually the mask slips off. i feel very welcome here and again that name you suggested seems to fit me!



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10 May 2023, 1:11 pm

It took me 64 years to even consider whether or not I was on the Autism Spectrum so I won't presume to guess whether or not you are, but I will note that many of the traits of Autism are not unique to Autism.

And you mentioned ADHD.

My understanding is that ADHD and Autism share some traits and that can cause confusion. If that is a factor here, then this chart might help:

Image


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BreathlessJade
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10 May 2023, 3:44 pm

Double Retired wrote:
It took me 64 years to even consider whether or not I was on the Autism Spectrum so I won't presume to guess whether or not you are, but I will note that many of the traits of Autism are not unique to Autism.

And you mentioned ADHD.

My understanding is that ADHD and Autism share some traits and that can cause confusion. If that is a factor here, then this chart might help:

Image

very very helpful!!



nca14
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10 May 2023, 4:01 pm

Double Retired wrote:
Image

According to this chart, I have rather ADHD than ASD... I have many (but rather "narrow" and occupationally impractical) interests and I might say that I am prone to boredom. In my country diagnosis of AS/PDD, of autism spectrum disorder, may be very beneficial, pervasive developmental disorders are considered separate type of disability (other than "typical" mental illnesses or disorders (like schizophrenia or marked depression) and other than intellectual development disorder) in Polish law now named "12-C - całościowe zaburzenia rozwojowe" ("pervasive developmental disorders"), I think that it is bad, there should be special category for all developmental, childhood-onset mental disorders (including, for example, ADHD, NVLD, SCT, social communication disorder), NOT just ASD or DSM-IV/ICD-10 PDDs. For me some cases of ADHD in people who do not meet DSM-V autism spectrum disorder criteria should be considered genuine cases of a pervasive developmental disorder (and they may be even more disabling than ASD, especially ASD level 1).