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Double Retired
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10 May 2023, 4:51 pm

Double Retired wrote:
Image
It is important to remember that this chart is an incredible simplification of a complex reality...which is further complicated by other possible diagnoses that also overlap the Autism Spectrum.

My bride and I did find the chart useful, however, when we were establishing my diagnosis. As we learned more about Autism she was taken aback a bit because she also had many of the symptoms. However, she is a very clear ADHD and this chart persuaded her to go back over to her diagnosis and leave mine alone. :wink:


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BreathlessJade
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10 May 2023, 4:53 pm

well said, i agree



racheypie666
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10 May 2023, 5:06 pm

I'm really sorry you didn't get what want. I know the feeling and it is devastating. The first specialist I spoke to thought my behaviour was born from childhood trauma, but luckily I got a proper full assessment and they said I have autism and childhood trauma haha.


If you get another chance, think really hard about your masking behaviours before you go in. The first specialist thought that I was too good of a communicator to have ASD, because I understood figures of speech and was able to give a back-and-forth in conversation. The ADOS test thing does feel like it's aimed at children, and if you're a person who masks a lot, you have to try and strip your social skills back to their natural state, before the world had a chance to force you to fit in. They do a puzzle with blocks where they don't give you enough blocks to complete it, and the rest are with the assessor. I believe they're testing to see whether you will ask them for the additional blocks or whether you'll just take them. IDK about you but I was taught about sharing and not snatching when I was a child lol. In a structured setting like that, with a stranger who's an authority figure, I asked for the extra bricks, because I know that that's the polite thing to do. In real life I (apparently frequently) walk straight through people and objects to get what I want, completely oblivious of my surroundings. But I didn't demonstrate such behaviour in the assessment, so I failed that part of the initial assessment.


Once I got my full assessment and my second chance, I was deliberately rude. The picture book they had was about flying frogs (maybe yours was too; I think it's a widely used book for the test). Now, I am fascinated by weird events and folklore and things, so when the frogs fell from the sky in the book, it reminded me of various historical instances where it 'rained' frogs or fish on land, and the science behind the phenomenon. I am an intelligent and socialised person; I know it's not polite to go off on a tangent about a special interest like that, and that people find it boring and weird. I would never do it in a normal conversation, even though my brain would want me to. But I remembered what I'd told myself about consciously unmasking in the test setting, and I went for it. I behaved the way I wanted to, not the way that I knew I should, because that is authentically me. It almost feels like you're faking it because you're pushing yourself to do it, but you have to remind yourself that no, you're faking it all the rest of the time. It was really hard to go against the grain and do something rude like that, and I winced when I read the report later and she said that my responses were inappropriate and impolite. BUT it got the job done.

I've read in some cases they have the assessor say something about their personal life to see if you'll show an interest or an emotional response. For example, they might say, 'I'm going on holiday soon' to see if you'll ask where they're going. The problem is, if you're functioning in the world, there's a high chance you know that it's polite to ask where they're going, and so you would be seen as normal in that part of the test. It doesn't investigate whether or not you had to make a conscious effort to say the expected thing, whether you're pretending to care, whether at some point in your life you've been chided for not showing enough concern for other people. I had some of my best friends call me a psychopath and mean it. That tends to make you try and change the way you speak to people.

It's definitely not a test meant for those who mask successfully, but are crumbling inside.

If you are able to, it helps a great deal if you can have any input from someone who knew you in your childhood. I know that won't be possible for everybody.



Double Retired
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10 May 2023, 5:13 pm

Um...maybe we shouldn't tell folk too much about the test? We wouldn't want them to overthink things in advance and bias the diagnosis.


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racheypie666
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10 May 2023, 5:28 pm

There's already plenty out there about the test. Most people will go in blind. I looked it up after my test to see what they were actually looking for, because it wasn't clear in the summary that my assessor gave me and I had no idea what they were testing for with all those little bits. I still don't quite know what the storytelling bit was looking for, and there was a bit with flashcards of people and emotions that couldn't have been as straightforward as it seemed.


I'm not going to take the comment down because I think it's an important point for people who mask successfully. Women are chronically underdiagnosed, in no small part because we're socialised to be polite and follow all those little scripts of conversation to seem like we care. It adds an inherent bias to the current testing. I've spent my life pretending to be a different version of myself in order to fit in. IMO a little overthinking is required to undo that if you want to truly reflect your faculties in a test. Otherwise they'll just end up testing the fake persona and conclude, as in OPs case, that you're a normal enough person who's just over-anxious.



BreathlessJade
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10 May 2023, 5:56 pm

i felt like it was less about me and more about what i wasn't. one thing is for sure, i'll take both your advice, i will be as real (even alil crass if it calls for it) and i won't think too much about what's expected. i think i'm gonna focus on adhd for now.



MatchboxVagabond
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10 May 2023, 6:22 pm

BreathlessJade wrote:
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.

There are so many different reasons why an evaluation can come back negative that don't mean that you're not autistic. It's also possible that you're not technically in the spectrum, but still have substantial traits to the point where you might as well be considered in. When I was evaluated all those years ago, it was hard enough to score an OCD/ADHD diagnosis, getting an AS diagnosis on top of those and schizo-anything was more or less an impossibility without violating the DSM criteria.

Diagnosis of adults with neurodevelopmental conditions is usually not easy. If it was an easy diagnosis, you likely wouldn't have needed to seek one out in the first place. Getting a diagnosis as an adult can be a massive inconvenience, and expense, so most places where ASD people hang out aren't going to require a formal diagnosis, a self-diagnosis is just fine.

Personally, I'm working on getting reevaluated because after 15+ years that it's something that's important to me even though it won't really get me any support or resources that I can't get from the community just for caucusing with them.

Just realize that you belong here even if the truth winds up being a subclinical level, you can still be a legitimate member of pretty much any community that deals in ASD.



MatchboxVagabond
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10 May 2023, 6:28 pm

Double Retired wrote:
Um...maybe we shouldn't tell folk too much about the test? We wouldn't want them to overthink things in advance and bias the diagnosis.


That's a fair point, although you can also go too far in the other direction. I don't know that that's what happened with the OP, but both types of error are easily made with undiagnosed adults.

That being said, anybody that is in the position of not liking a negative result to this extent is probably more at risk of a false negative than a false positive. Although, I'm sure both possibilities can and do occur.

Beyond being familiar with the condition and having a few relevant anecdotes and examples to share, I don't see much point in doing much more to prepare. Although anything that comes from family in relation to this can be helpful.



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10 May 2023, 9:39 pm

racheypie666 wrote:
I've read in some cases they have the assessor say something about their personal life to see if you'll show an interest or an emotional response. For example, they might say, 'I'm going on holiday soon' to see if you'll ask where they're going.


I wonder how complete honesty would fair in this situation, i.e. Say 'so' or 'and' or 'I couldn't give a s**t , I just wanna leave but I know from experience that I should respond in some social way but I'm just not that into you.' :twisted:


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10 May 2023, 9:52 pm

Mine invited me to go for lunch with her during the break. I hadn't brought any food (ADHD), and said I'd prefer to sit alone in a dark room somewhere. She put me in a staff meeting room. When she came back in I was curled in a pretzel shape in the corner playing with my feet. Lights out. No food or water. Perfectly content.

:twisted:


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BreathlessJade
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16 May 2023, 11:55 pm

also, my therapist and psychiatrist are very careful to reiterate that they are not able or interested in trying to diagnose me. they keep it very professional and focus on helping me "feel" and "function" and i appreciate that. i do, however, regret sharing so much because now i'm constantly looking at them and wondering if they really believe what i'm saying? whey they throw in comments like "yeah, well this could be ptsd that looks like autism." i think i'm very paranoid, but it feels like they are slyly coercing me away for this community (they literally tell me the opposite) i just don't feel like they are talking to each other during lunch about how i'm misguided. i really need to stop worrying about what people think as far as legitimacy. i LOVE this community



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17 May 2023, 8:24 am

BreathlessJade wrote:
...I provided research, lists, very personal experiences...

I did exactly that!!

Try, try again.

Both my children were not diagnosed with ASD with their first evaluations. My daughter is definitely ASD and my son may be (PDA type). For myself, I went to a dr who was known for evaluating adult women (or men presenting more socially) with ASD. Even so there have been ASD folks who "passed" as allistic with him. The reason I was diagnosed was that I was in a stressful work situation and so my masking was failing. Even so I passed the ADOS-2 as NT, but he diagnosed me based on other criteria. If I had been relaxed and masking better I may have only gotten the typical "mood disorder" DX. He (we) missed my ADHD. I didn't know I had it (seemed normal to me) and so didn't report it from the perspective of an NT norm. In part it's a Catch-22 because we have to know what to tell them that makes the difference to them. Like with my daughter, I can tell them all that I see that indicates ASD, but I miss that key interpretation or that key situation that they need. It seems have social problems is key ... but we mostly compensate well or suppress our difficulties, especially outwardly, it's doesn't "show"... ugh. I guess "thank you" for my ex-boss who provided the stress and trauma to highlight my Autism. Our 2nd evaluation for my daughter is next month. She's not in crisis, so we'll see how this goes... again. So much for "preventative" and good care. We need the crisis for DX.



BreathlessJade
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25 May 2023, 4:41 pm

very helpful info!