Has anyone ever felt they had a undiscovered condition?

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League_Girl
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04 Nov 2021, 2:39 pm

I have been told since I was 15 by my mom I was not a real aspie and I was not autistic and we only got the diagnoses to get me through school. She also said it came and went and she also said it was the closest diagnoses for me.

So then on I thought I had a disorder that is not described yet and was convinced if my psychiatrist saw more patients like me, he would have given it a name and described it and I would have been the first to be diagnosed with it.

Plus I have realized how damaging it is to bash and stereotype NTs and how the autisms supremacy also affects people on the spectrum as well. And because of it, I thought my mom is right, I am not a real aspie because I am not logical, I suck at math, I am too emotional, I must be too NT to be aspie. I just felt like I was in between two worlds. Too aspie to be NT and too NT to be aspie. I felt like a fraud. I am so glad we have moved away from the autism supremacy and the NT bashing as well. It was very bad here ten years ago and even in the early 2010s, it was still here. I had even stopped attending autism groups because I felt my diagnoses was fraudulent and it was only given to cheat the system and I should have just been abandoned in the school system. Plus it didn't help when I was reading online how autism is over diagnosed and it's being handed out like candy and being given to kids who don't have it just so they can get services. It made me think "was this me as well because we didn't have the no child left behind act back then?" Then I read The Difficult Child and it made me wonder "is this me, what if this was me and I only got diagnosed because of my school?" The doctor who wrote that book does not think that every child with problems has a disorder. He also thinks you can have social issues and be eccentric and be sensitive and not have AS.

So has anyone ever felt this way as well about themselves?

I used to talk about it a lot here and discovered it made some users here uncomfortable and made me the "bully" all because I was talking about myself here and it made them upset. I guess I was making them think "if that is what happened to League Girl, how do I know that isn't what my doctor did? What if he just gave me the diagnoses because he thought I wanted it?" So I would say their anger was misplaced so it was easier to blame me than giving me support. I felt I couldn't even talk about my diagnoses without offending anyone and I felt invisible and that I don't exist. I was even questioning all my symptoms and thinking if these are just quirks and thinking "well I don't think they give me an impairment so I guess they are not symptoms." Well my mom said I only have symptoms when I am a stressed and I am not stressed so this must not have been a symptom here, I must be suffering from something else that hasn't been discovered yet." I did have one mod here tell me a few years back that my mom is a jerk for saying all this to me and she was gaslighting me. That is the only support I had gotten here from someone about my diagnoses.


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04 Nov 2021, 3:10 pm

YES, YES, YES! Okay, first of all, I love you for talking about this. I feel so validated right now it's insane. I have been given so many fake diagnoses by my therapist, with countless wrong things on my record. My mom eventually told me that I simply couldn't be categorized, and I'm in between being autistic and not. I feel like a faker so much. I actually have faked things unrelated to autism. I think autism is the closest I can get to labelling myself, so I'm trying to get diagnosed with that right now. But, I know deep down, that it isn't really me. Nothing anyone else says about me will ever be me.
I try not to think about this. It gets me feeling sad. No one should have to deal with this. Being in between a million different things. Never being able to track down the exact problem. Realizing you have symptoms of everything, but not enough of any of it to be anything. Because you can't label yourself, and others can't, you struggle in silence. Everyone ignores you. They don't know how to react.
My sister theorized that I am the embodiment of everything combined. Every struggle all shoved together into something you can't define. Probably doesn't make any sense.
For this lifetime, I will say I am autistic. It makes it easier for others to understand. I am still trying to convince myself that I'm autistic.
In the end, you are. It's that simple. We all are. Meaning you are a part of this universe, and by being a part of this universe, you can pick up everything. You have an unlimited storage, and can be everything. You are not your label. You simply are you. And no one knows you better than yourself.
I'm sorry if that sounded crazy. I was just happy that I can relate! You can always talk to me! :heart:



Mountain Goat
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04 Nov 2021, 3:59 pm

I will write more in a bit.

All through my life I seem to have felt an inbetween.

This feeling... How best to describe?



GadgetGuru
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04 Nov 2021, 4:11 pm

Given that we (humanity) are still deep in the dark ages of understanding both the brain and the mind (or if they are even distinct things), the current labels that we apply such as "Autistic" are not going to perfectly resonate, since the labels are still determined by a subjective and ever-changing process. We may be decades away from applying even partially objective diagnoses to complex issues like what we now call "Autism". But that said, Autism does seem useful in at least trying to reconcile certain "sets" of behaviors.

Given the medical model of Autism, that of applying certain diagnostic criteria that seem largely based on a "from the outside" perspective, it seems to me that the next big leap may well be largely contributed by the people who inhabit the inner spaces that the outside perspectives have defined. What we can describe about the ways that we experience life, and especially in the ways that we perceive other humans may well be a critical clue to further the understanding of what many consider to be fundamental differences in cognition. Until we can add reliable examinations of (potential) differences in the structure of the brain, we can only continue to talk about what our life experiences are.

Those of us who are now commonly called "high functioning" perhaps owe it to science to point out differences between our own experiences and how the current diagnostic standards seem to "limit" the range of characteristics that are diagnostic to Autism. For example, I find the idea that "Special Interests" must be narrow in scope rather incomplete, since I've heard of (and lived) too many examples of a "rotating" set of interests, meaning being very focused on an interest (generally "just" one at a time for me), and yet moving on eventually to something else, then coming back later to each interest.

And for those of us who very gradually developed masking and coping skills without ever being aware that that was what we were doing, that learned superficial appearance of normality will generate feedback from others sufficient to make you doubt your own "true self", no matter whether that "autistic" self has been externally or self-diagnosed.

Here's a quote I discovered earlier today that resonates for me:
"So-called mild Autism doesn't mean that the Autistic person experiences autism mildly. It means YOU experience their Autism mildly"


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Joe90
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04 Nov 2021, 4:35 pm

Yes, I seem to be Neuro-trans, like the neurological version of transgender, in other words I'm on the spectrum but I'm not meant to be.


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meatball4u
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04 Nov 2021, 7:58 pm

There's a lot of ways autism can manifest in a person, don't let the cliques or popular stereotypes fool you. I went 34 years thinking I was just some rare NT or some undiscovered type of person because I didn't fit the typical aspie model. I am terrible with logic, to the point I believe it's an actual disability akin to dyscalcula or something of that nature. This threw me off the trail to autism diagnosis big time. I'm also very self-aware and intuitive of my own and others emotions, which seemed like the opposite of what aspies were "supposed" to be. I'm also such a big-picture thinker I often miss the details of a situation or problem, another major difference between me and the aspie stereotype.

But I am autistic. Hands down. No doubt about it. Nothing else explains me better. What I think is going on is that the world is still waking up to neurodiversity, and a lot of us are being missed. I'm a guy, but I honestly feel like I present more like how aspie women present, and they are still being missed for diagnosis in large numbers. I hope this turns around and we find those out there who don't fit the mold but need the diagnosis and support



Angnix
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04 Nov 2021, 9:27 pm

I just don't know what the heck I am anymore... I just give up... And the meds don't fully help me with my emotional meltdowns or stability...

Just too different than anyone else I've ever met...


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Edna3362
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04 Nov 2021, 9:35 pm

Yes.

From where I came from, it's held up in the air on what kind of an ND am I for at least 5 years.

And at the time I didn't knew that ​independent, intelligent and capable autistics exists.
I did not like it -- the idea that I won't ever be independent and capable, and the evidence of my intelligence contradicts the idea.

After I got diagnosed, I tried to figured myself as an aspie.
Found too many traits that do not resonate nor reflect well, save for a number of core traits.

From common aptitude profiles to subtle distinctions in social attitudes. Even mental health compared to even the most well supported ones.
Comorbidities and co-occuring conditions almost never resonate.

Though no one ever told me I'm a real aspie. I sort of did myself though. :lol:

Not BAP either. It's just not in my personality. And not when I'm playing catch up at this age.


Turns out I'm a hybrid of both Aspergers and classic autism.
Or so a professional opinion said.

Perhaps I'm actually a classic autistic who can keep up with an average aspie, with no significant delays enough to manifests as another label, and is qualified for the aspergers label.

I tried to see that too. It fits more. :lol:
Probably because it's broader trait wise, but also narrower qualification wise.


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theprisoner
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04 Nov 2021, 9:38 pm

I don't' know what i am. What this is. all I know is I'm definitely different.


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ThisTimelessMoment
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05 Nov 2021, 12:01 am

It is quite possible that your mum also felt that being labelled was a negative thing for your development and voiced her doubts. So hearing her doubts, just like being labelled can have positives and negatives.


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05 Nov 2021, 8:28 am

League_Girl wrote:
I have been told since I was 15 by my mom I was not a real aspie and I was not autistic and we only got the diagnoses to get me through school. She also said it came and went and she also said it was the closest diagnoses for me.

So then on I thought I had a disorder that is not described yet and was convinced if my psychiatrist saw more patients like me, he would have given it a name and described it and I would have been the first to be diagnosed with it.

Plus I have realized how damaging it is to bash and stereotype NTs and how the autisms supremacy also affects people on the spectrum as well. And because of it, I thought my mom is right, I am not a real aspie because I am not logical, I suck at math, I am too emotional, I must be too NT to be aspie. I just felt like I was in between two worlds. Too aspie to be NT and too NT to be aspie. I felt like a fraud. I am so glad we have moved away from the autism supremacy and the NT bashing as well. It was very bad here ten years ago and even in the early 2010s, it was still here. I had even stopped attending autism groups because I felt my diagnoses was fraudulent and it was only given to cheat the system and I should have just been abandoned in the school system. Plus it didn't help when I was reading online how autism is over diagnosed and it's being handed out like candy and being given to kids who don't have it just so they can get services. It made me think "was this me as well because we didn't have the no child left behind act back then?" Then I read The Difficult Child and it made me wonder "is this me, what if this was me and I only got diagnosed because of my school?" The doctor who wrote that book does not think that every child with problems has a disorder. He also thinks you can have social issues and be eccentric and be sensitive and not have AS.

So has anyone ever felt this way as well about themselves?

I used to talk about it a lot here and discovered it made some users here uncomfortable and made me the "bully" all because I was talking about myself here and it made them upset. I guess I was making them think "if that is what happened to League Girl, how do I know that isn't what my doctor did? What if he just gave me the diagnoses because he thought I wanted it?" So I would say their anger was misplaced so it was easier to blame me than giving me support. I felt I couldn't even talk about my diagnoses without offending anyone and I felt invisible and that I don't exist. I was even questioning all my symptoms and thinking if these are just quirks and thinking "well I don't think they give me an impairment so I guess they are not symptoms." Well my mom said I only have symptoms when I am a stressed and I am not stressed so this must not have been a symptom here, I must be suffering from something else that hasn't been discovered yet." I did have one mod here tell me a few years back that my mom is a jerk for saying all this to me and she was gaslighting mes. That is the only support I had gotten here from someone about my diagnoses.
I'm heading towards a sort of dissociative dementia from extremeyl esvere psychological trauma and that's not really documented as far i am aware. I'm breaking new grounds!


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HeroOfHyrule
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05 Nov 2021, 3:13 pm

I think technically a lot of us probably have "undiscovered conditions" due to how many different genes are associated with ASD, that may or may not end up with their own labels and diagnoses. I both fit and don't fit the stereotype of people with ASD and I just chalk it up to that and whatever brand of "autism" I might have. lol



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05 Nov 2021, 3:19 pm

Having received an official diagnosis only in the last ten years, I had an undiscovered condition until then.

"There is nothing wrong with you, you're just lazy and daydreaming your way through school!" is what I heard from my first day of kindergarten to the day I graduated, and sporadically for many years thereafter.



Last edited by Fnord on 05 Nov 2021, 4:09 pm, edited 1 time in total.

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05 Nov 2021, 3:35 pm

The doctor felt I had a NVLD - Not Otherwise Specified not true Aspergers



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05 Nov 2021, 8:13 pm

I say that all the time: I am not Autistic at all when I am relaxed. I am only Autistic when I am stressed. Unfortunately I am stressed all the time. :wink: (in this particular phase of life, but it won't be always)

Before that I thought I was normal. My parents told me I was. My mom didn't see any Autism in me - I'm just like her. Do you see where this is going?

I am Autistic. If not Autistic then I am a perfect mix of GAD, RSD, PDA, ADHD, OCD, PTSD, etc. Relaxing is for me is a busy mind. I could spend all day doing puzzles by myself just as easily as I can spend all day with anybody who is willing to do what I want to do. My ASD-like BFF and I can talk and philosophize for hours!! ! Now when my (NT) son asks me to do what he wants to do (imaginative play, tell a story) -- that's torture. But I know it's the right thing to do, so I suck it up (for the 5 min that I can). Not surprisingly my (ASD-like) daughter rarely makes requests but when she does it's for action games (much easier). I am guest teaching and everyone is weirded out that I like to work. I'll arrange books on the bookshelf or sort the blocks or clean up the bits of paper on the floor if there's no student-related activity to do. Apparently this is unusual. I don't understand why. I guess I'm supposed to be going around and chat with other teachers, but aren't they working? My examples are that it isn't just about numbers and flapping the hands. Maybe you can see how you "surprise" people.

In my part of the world (women and girls), Autism is greatly underdiagnosed, so I'm not sure where overdiagnosis is. My mom and daughter are Autistic and yet they are diagnosed as Depressed and Expressive Language Disorder respectively (not ASD). Sometimes I think, I must not understand what Autism is ... but I do. They're Autistic. My daughter's 3rd grade friend could see it: "your daughter does her own thing" alongside for her need for routine, logic, downtime, etc. So I have the opposite problem. I believe my daughter is Autistic but her diagnosis says differently. Am I gaslighting her? Or is it simply lack of understanding, definition, etc. What a mess that way.

Wishing you peace in who you are.



Glflegolas
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06 Nov 2021, 6:37 am

Yes - I know that in my case that professionals were not able to provide a deterministic answer. When I was a child, the answer was yes, but when I asked a psychologist a few years ago, she said "I'm not sure." What was noted, however, is that I had challenges with visual memory, visual motor coordination, and processing speed, along with excellent verbal skills. Another psychologist thinks I have NVLD. I personally think I have a visual-spatial deficit. There has been talk about including spatial processing disorder as its own thing, so... maybe that's the best descriptor?

I also tried the AQ and RDOS tests and they back up the results above. Both of the tests showed that I'm not NT enough to be fully NT, but not autistic enough to be considered autistic. It's possible that the traits originally attributed to ASD may be caused by a lack of visual processing speed, but that's hard to know for sure.


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