Anybody else struggle to accept their diagnosis?

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Joe90
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02 Nov 2019, 2:38 pm

I'm trying hard to look up information about this but all that comes up is about recently diagnosed adults, or parents with recently diagnosed children. There seems to be very little information on adults who have been diagnosed for many years but still struggle to accept it and often beat themselves up about it or stay in denial. I'm one of those people, and I want to read more about this situation and how it affects others who feel the same and why we feel this way about it, but I just cannot find any information on it.
I've always been ashamed and closeted about my Asperger's. I was diagnosed at 8 or 9 and didn't take it too well at all. I was angry about it. I've managed to find this small piece of text about children who hate their Asperger's, and I felt no different to this as a child:-

Quote:
On the other hand, to some children, the word Asperger’s can feel like a disease or a term describing what is “wrong with them.” We have seen children who were exposed to the word Asperger’s when they were diagnosed but avoid saying it, because of the sense of impairment it represents. In this regard, it can feel like an albatross. They may see Asperger’s as a challenge that holds them back from reaching their potential.


Aside from being able to talk about Asperger's to close family members without getting angry, and also coming on to WP and posting all this time, I am still closeted about it to my friends (even Aspie friends), colleagues, boss, family members who don't know I have it, and even my own partner. I often beat myself up about having it, and I am hanging on to hope that I was misdiagnosed, and I try my best to come up with other reasons why I make social faux pas.
Please, is there anyone else who beats the record of being closeted and embarrassed about having Asperger's for 20 years, if not is there anybody that can link me to some information on people in my situation (those who were diagnosed in childhood but still struggle accepting it as adults)?


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AlanMooresBeard
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02 Nov 2019, 5:28 pm

I was also diagnosed when I was about 8 years old. I’ve always accepted that it’s part of who I am and I don’t get particularly stressed about it. I do find it frustrating sometimes but I’m certainly not ashamed of it. I’m not usually open about it though. Only my close family and a handful of trusted friends know about it.

I don’t really have an answer for you, Joe. All I can say is that as you get older, maybe you will finally come to terms with it and you can try to live with it as best as you can.



LoveNotHate
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02 Nov 2019, 5:34 pm

I was diagnosed at 36ish.

After my diagnosis, the first question was "what do you want to work on"?

The doctor handed me a sheet of paper listing medicines to take.

So, you have to decide, will you live with your symptoms or treat them?

I struggle with the idea that dysfunctional ME is a mental illness that can potentially be corrected by drugs.

(I took Resperdal and Zolof with no better functioning).


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Fireblossom
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03 Nov 2019, 4:36 am

I was diagnosed as a kid and never had trouble accepting it; for me it was just a medical fact, just like my other diagnoses. Maybe that had something to do with it: having so many physical problems and diagnoses for them, I just considered AS diagnosis to be one among the others.



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03 Nov 2019, 5:00 am

The difficulty is "How do we know that when we struggle with something, that the nature of the struggle is autism related, character related or daily life related?"


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03 Nov 2019, 5:20 am

I had a surprising reaction in the actual assessment (as an adult).
The team I felt seemed to have decided in the initial meeting that I was on the spectrum.
I dont know why but this made me question nearly every question they asked me, I wanted to know their reasoning.
This put my mind at ease, as each member patiently explained everything and left me with no doubts as a result.

Could you see someone privately for a screening and a discussion, it would give you a chance to figure out if the diagnosis fits? It might help you move forward :).



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03 Nov 2019, 5:52 am

I was able to on an open day where I wanted to know if what I was experiencing was related to shutdowns. But I didn't go beyond that other then to open out (For the first time ever) about my struggles to be able to financially support myself which wasn't working. (Not since I have gone through several bouts of burnout (Which came on me mildly but really effected my "Spoon" levels and also made me far more prone to partial shutdowns etc.)).


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Edna3362
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03 Nov 2019, 6:08 am

Not in a way that others do.


.. A dark part of me does. That part of me stems probably at age 5 or so, for reasons I'm not sure myself.
It was a part of me that reasoned that I'm better than everyone realizing I'm different from others.
It was a part of me that refused to listen to an inner voice that said that I should accept the diagnosis.
It was a part of me that left coping through arrogance and denial on the pretense of acceptance.

The egocentric part of me never accepts, never forgives. Because this part of me had yet to actually pass the idea of acceptance is equals giving up or surrendering.
This part of me acts as if it's deprived and remained unfulfilled.
This part of me likes to reason negative things, like, as long as I have (trait), I remain useless.

And this part of me is clever enough to sustain itself. The side of me that brought me an idea of one-sided acceptance.
It's an insidious side of me that is held back if it weren't for developmental delays.
This part of me has this delusional self-image that whatever trait I have or point of view is 'better', and autism is one tarnish of a flaw.

So clever, it likes to bring negative ideas away from whatever label I got -- the one that reasoned it's the comorbids and circumstances despite that I don't really have that much of a problem (surprise, surprise) as opposed to a more complete picture. :lol:

It's a really clever part of me that can contribute. Enough to aspire to be an autistic unlike so many.


It's a subconscious part of me as far as I'm concerned. It lingers deep.
And it's a part of me whose growth and improvement is the strongest -- and it's all for the sake of myself and myself alone, be it keeping up images, being useful or anymore insidious agenda that empowers ego.

It's a very necessary kind of dark if one looks at it in a more objective light.
But also very twisted in another. :lol:


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naturalplastic
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03 Nov 2019, 7:20 am

Do a thought experiment.

What if some kind of infallible Pope of psychiatry had an "audience" with you, and examined you, and then declared your diagnosis to be wrong. And declared you to be NT.

How would that improve your life in any way?

Would you suddenly become successful, rich, and famous, the next day?

You would have the same life challenges that you always have had. They wouldn't go away, anymore than do the symptoms of a cold go away just because you decide to not label yourself as "having a cold".



Last edited by naturalplastic on 03 Nov 2019, 8:11 am, edited 1 time in total.

Joe90
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03 Nov 2019, 7:37 am

naturalplastic wrote:
Do a thought experiment.

What if some kind of infallible Pope of psychiatry had an "audience" with you, and examined you, and then declared your diagnosis to be wrong. And declared you to be NT.

How would that improve your life in any way?

Would you suddenly become successful, rich, and famous, the next day?

You would have the same life challenges that you always have had. They wouldn't go away, anymore than do the symptoms of a cold go away just because decide to not label yourself as "having a cold".


They won't go away but at least I won't be lumped with autism any more and can pretend I never was, especially if it turned out that all the 'symptoms' were ADHD and anxiety disorder (both I have got too).
I'm not saying Asperger's or autism are bad. I like and respect others with it. I just feel ashamed about it in myself.

I find it so hard to explain this in words, which is why I want to find some resources that explain this type of situation in some Aspies.


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naturalplastic
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03 Nov 2019, 8:39 am

So...

You would have a better biography if they took away your autism diagnosis?



Temeraire
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03 Nov 2019, 9:48 am

Mountain Goat wrote:
The difficulty is "How do we know that when we struggle with something, that the nature of the struggle is autism related, character related or daily life related?"


Bloody good question Mr Goat.

This is the extra aspect we have to consider that the majority don't.

I get where Joe is coming from. If we don't know or it doesn't feel right then how can someone else know this? Throw in some shame and life can be terribly confusing and unsettling.

It is as if we have to trust the assessment of 1 or 2 people and accept it. Verbatim.

I certainly feel as though I could have done with more evidence and a detailed write up of issues and markers.

Some tailored after-care/support would have been useful.



hellhole
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03 Nov 2019, 12:49 pm

Look if it makes you feel any better the underlying cause is probably low esteem or something like that, go ahead and do what I do and semi-accept/minimize it/just forget about it. Or just tell yourself everyone is an individual and to tell you the truth it's just a thing that you have, like how others have epilepsy or something. You have a personality like everyone else and having this isn't a death sentence, or an identity, I've met a few people with higher-functioning cases and to tell you the truth they're all really pleasant individuals.


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03 Nov 2019, 2:14 pm

Tony Atwood has said that he diagnosed a kid with aspergers and then re-assessed them when they were older and found that they didn't actually meet the criteria for aspergers/ASD anymore. Perhaps you really were misdiagnosed and a reassessment would highlight that? Have you tried to get re-assessed?



carlos55
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03 Nov 2019, 2:26 pm

Joe90 wrote:
I am still closeted about it to my friends (even Aspie friends), colleagues, boss, family members who don't know I have it, and even my own partner.


From the above you`ve obviously done ok for yourself i.e got a partner, friends & a job, more than most with ASD, so well done.

Its ok to hate Aspergers or Autism just like its ok to hate schizophrenia, or hate any pathology you`ve got that holds you back.

One of the saddest things about parts of the Neurodiversity movement is the inability of many to separate their diagnosis from their themselves. So they feel an attack on ASD, like wanting a cure or to be cured for example is an attack on them, which is just plain idiotic in my opinion.



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03 Nov 2019, 5:46 pm

carlos55 wrote:
Joe90 wrote:
I am still closeted about it to my friends (even Aspie friends), colleagues, boss, family members who don't know I have it, and even my own partner.


From the above you`ve obviously done ok for yourself i.e got a partner, friends & a job, more than most with ASD, so well done.

Its ok to hate Aspergers or Autism just like its ok to hate schizophrenia, or hate any pathology you`ve got that holds you back.

One of the saddest things about parts of the Neurodiversity movement is the inability of many to separate their diagnosis from their themselves. So they feel an attack on ASD, like wanting a cure or to be cured for example is an attack on them, which is just plain idiotic in my opinion.

Saddest part about humanity is the inability to discern true acceptance, from naïve partial/egocentric acceptance that is ran deep by guilt and shame.

My observation says:
Both the naïve and egocentric partial acceptance, and the 'anti-ND' side have the same principle on a deeper and darker levels.
The former are just compensators whether unaware or not, the latter just likes to call the label out.
Both are attached to the label all the same, spending and spreading either good and bad thoughts at it -- thinking they're both oppositions of one another. Both will jump and 'support' those that 'resonates' with one another.

The OP wants to know where this nonacceptance came from. No amount of praising pro-social NT traits and NT 'ideal' accomplishments seem to console that.
The OP isn't being anti-ND, the OP is more stigma-specific label-wary. A lots of times, the OP wants 'out' but doesn't know how.



As much as I'm just some person trying to live, you're just another tired parent I'd take it. :lol:


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